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Reflux problems while taking 80 mg of Aciphex and after forgoing a cholectectomy
Approximately 3 years ago after vomiting I begun having severe bile reflux every night until I had a cholectectomy. Afterwards, I have continually been treated with 80 mg of Aciphex daily. The Aciphex is working because without it the burning in my chest and mouth is intolerable. However, I still have reflux coming into my mouth. I can taste something sour or chemical like. My nerves in my gums and teeth are inflamed,sensitive and tender. It also has been destroying my dental work. Less than a year ago I had a Nissen Fundolplication and just recently an Enteryx procedure about 5 days ago. The reflux continues to persist in my mouth and esophagus. Also, since the Fundoplication I have excessive gas, diarrhea and the urge to go to the bathroom immediately after eating. Why do you think I continue to have have reflux? Could this be bile reflux? How can it be diagnosed? Can it be treated? I am miserable. What do you think is going on?
Hi,
Greta told me about this message board, and I'm thankful she did.
I too had Nissen Fundoplication surgery. I had mine a year ago this past August. It's been one big nightmare. I was told I could eat whatever I wanted 2 weeks after surgery, I was told I "May or may not" lose up to 15 pounds after the surgery, and that I may have a little trouble burping and swallowing for a short while after surgery. I was NOT told to continue taking any meds, I was NOT told of how many others that had had so many problems <which I guess I shoulda known better than that> and my stay in the hospital was nothing short of insane. From the moment I woke up from surgery I could hardly breathe, and I kept telling them but they would not listen to me. They sent me to my room, sent in the most GOD awful nurse that refused to help me out of bed to get to the bathroom <claiming she had a torn rotator cuff> and refused to get anyone to help me, she just stood in front of me and watched as I dragged myself out of bed, so when I asked her to move so I could get past her to the bathroom she told me that i needed to be nicer and left with my pain meds. I could not believe it. I got myself dressed somehow and found my surgeon in the hallway and told him of the situation, he took me back to my room and I told him how I was having serious trouble breathing still, and what did he do? DISCHARGED ME! 3 days later I was in the ER, again with serious trouble breathing, they sent me home, said nothing was wrong. So I called the surgeons office, begging them for help. They said I'd have to go to his other office across town the next day. So somehow I managed to drive myself there, and ran into the surgeon on my way in, he could see how much trouble I was having simply walking. I wasn't there 10 mins, and he sent me to the ER to be admitted. Gave me 2 slips of tests he wanted ran. Turned out I had pneumonia and my left lung was collapsing. FINALLY someone was going to believe me that I couldn't breathe, right? Wrong. He left me laying there for two days, never saw him again. So I signed myself out AMA, at that point I had absolutely no faith in him and wasn't about to trust him with my health. They paged him twice and both times he said he was too busy to come in to see me. Nice huh? I left and went straight to my family doctor and got a script for the med they had me on for my pneumonia and lung collapsing so I could continue treating myself. A month later it happened again, started throwing up blood, went to the doctor, he did xrays and admitted me, for another 7 days. I begged them not to send in the surgeon that did my surgery, because I had nothing to say to him. But.. low and behold, 7am, he and his associate where the first ones in to see me the next day. What did he say? "what did u do now?" Can you believe that? Treated me like a kid that had just got caught with their hand in the cookie jar or something. They put me thru the wringer with test after test, endoscopies, every nuclear med test u can imagine, stress tests, fluoroscopies, lung tests, heart tests, breathing tests, x rays, MRI's, CT's w/contrast, u name it. What did they say? Just that I had a mildly enlarged heart. What about my stomach? Their words .. "Adjust your life, learn to deal with it". They had me on shots of dilaudid every 2 hrs while I was in there, that wasn't for nothing. I got copies of my medical records, of which one page says I had a gastric bypass! But I had another endoscopy with pictures taken to prove that I didn't. Now, I'm a year out, have absolutely no control over my bowels, still cannot eat solid foods, cannot tolerate sugar, still have trouble breathing, but hey, no reflux! LOL I can't burp, or throw up, but I can't eat at all. The gas and explosive bowel movements are insane. I'm even having bowel movements in my sleep now. Specialist just put me on IB-STAT and Zelnorm, but she took me of Zelnorm today, said she was going to call me in Erythromyacin, starting to question her abilities though because umm, i'm HIGHLY allergic to that medicine and it says so in my chart! UGH! I've lost nearly 130 pounds, and keeping up with the clothes has been tough. I was unable to care for my daughter for quite a while, but she's 8 now and helps me the best she can. I'm just recently back to work because, well.. I have no choice really. Disability denied me, said I am employable, and I never said I wasn't, but good lord, I can't sit for more than 2 hrs without needing to run to the bathroom and I do mean run, I mean within 3 steps or it's going to be one big mess. The specialist did a colonoscopy last week with biopsies but found nothing and i'm back to square one, i've already had every test in the book, have had 10 endoscopies, barium swallows, upper GI's and lower, sigmoids, gastrofin , the whole bit. I was told at the age of 17 that my stomach does not empty properly, and that was in my records that this surgeon had before doing the Nissen surgery on me, and I have been told by 2 surgeons, as well as more than one doctor that this surgery never should have been done on me, but its too late now! She said I have to try Domperidone <motilium> before they will consider a digestive pacemaker surgery on me, but motilium is very expensive in the states, but I did find some on the internet internationally, but u never know what u are going to get if u buy it that way. Not to mention, nobody does digestive pacemaker surgery in the city where I am <Columbus, Ohio> I'd have to go to Cleveland, or Cincinnati, Ohio. For one, I just started my new job, so obviously I can't afford to take off work for that, for two, I don't have the insurance for it now, so I'm stuck. Any and all advice would be greatly appreciated, although there isn't much I have not done already that I know of!
Thanks again for the link and the tips Greta. Take good care all.
Pam in Ohio
http://groups.yahoo.com/group/RefluxSurgerySupport/
(The group I made on yahoo)
Greta told me about this message board, and I'm thankful she did.
I too had Nissen Fundoplication surgery. I had mine a year ago this past August. It's been one big nightmare. I was told I could eat whatever I wanted 2 weeks after surgery, I was told I "May or may not" lose up to 15 pounds after the surgery, and that I may have a little trouble burping and swallowing for a short while after surgery. I was NOT told to continue taking any meds, I was NOT told of how many others that had had so many problems <which I guess I shoulda known better than that> and my stay in the hospital was nothing short of insane. From the moment I woke up from surgery I could hardly breathe, and I kept telling them but they would not listen to me. They sent me to my room, sent in the most GOD awful nurse that refused to help me out of bed to get to the bathroom <claiming she had a torn rotator cuff> and refused to get anyone to help me, she just stood in front of me and watched as I dragged myself out of bed, so when I asked her to move so I could get past her to the bathroom she told me that i needed to be nicer and left with my pain meds. I could not believe it. I got myself dressed somehow and found my surgeon in the hallway and told him of the situation, he took me back to my room and I told him how I was having serious trouble breathing still, and what did he do? DISCHARGED ME! 3 days later I was in the ER, again with serious trouble breathing, they sent me home, said nothing was wrong. So I called the surgeons office, begging them for help. They said I'd have to go to his other office across town the next day. So somehow I managed to drive myself there, and ran into the surgeon on my way in, he could see how much trouble I was having simply walking. I wasn't there 10 mins, and he sent me to the ER to be admitted. Gave me 2 slips of tests he wanted ran. Turned out I had pneumonia and my left lung was collapsing. FINALLY someone was going to believe me that I couldn't breathe, right? Wrong. He left me laying there for two days, never saw him again. So I signed myself out AMA, at that point I had absolutely no faith in him and wasn't about to trust him with my health. They paged him twice and both times he said he was too busy to come in to see me. Nice huh? I left and went straight to my family doctor and got a script for the med they had me on for my pneumonia and lung collapsing so I could continue treating myself. A month later it happened again, started throwing up blood, went to the doctor, he did xrays and admitted me, for another 7 days. I begged them not to send in the surgeon that did my surgery, because I had nothing to say to him. But.. low and behold, 7am, he and his associate where the first ones in to see me the next day. What did he say? "what did u do now?" Can you believe that? Treated me like a kid that had just got caught with their hand in the cookie jar or something. They put me thru the wringer with test after test, endoscopies, every nuclear med test u can imagine, stress tests, fluoroscopies, lung tests, heart tests, breathing tests, x rays, MRI's, CT's w/contrast, u name it. What did they say? Just that I had a mildly enlarged heart. What about my stomach? Their words .. "Adjust your life, learn to deal with it". They had me on shots of dilaudid every 2 hrs while I was in there, that wasn't for nothing. I got copies of my medical records, of which one page says I had a gastric bypass! But I had another endoscopy with pictures taken to prove that I didn't. Now, I'm a year out, have absolutely no control over my bowels, still cannot eat solid foods, cannot tolerate sugar, still have trouble breathing, but hey, no reflux! LOL I can't burp, or throw up, but I can't eat at all. The gas and explosive bowel movements are insane. I'm even having bowel movements in my sleep now. Specialist just put me on IB-STAT and Zelnorm, but she took me of Zelnorm today, said she was going to call me in Erythromyacin, starting to question her abilities though because umm, i'm HIGHLY allergic to that medicine and it says so in my chart! UGH! I've lost nearly 130 pounds, and keeping up with the clothes has been tough. I was unable to care for my daughter for quite a while, but she's 8 now and helps me the best she can. I'm just recently back to work because, well.. I have no choice really. Disability denied me, said I am employable, and I never said I wasn't, but good lord, I can't sit for more than 2 hrs without needing to run to the bathroom and I do mean run, I mean within 3 steps or it's going to be one big mess. The specialist did a colonoscopy last week with biopsies but found nothing and i'm back to square one, i've already had every test in the book, have had 10 endoscopies, barium swallows, upper GI's and lower, sigmoids, gastrofin , the whole bit. I was told at the age of 17 that my stomach does not empty properly, and that was in my records that this surgeon had before doing the Nissen surgery on me, and I have been told by 2 surgeons, as well as more than one doctor that this surgery never should have been done on me, but its too late now! She said I have to try Domperidone <motilium> before they will consider a digestive pacemaker surgery on me, but motilium is very expensive in the states, but I did find some on the internet internationally, but u never know what u are going to get if u buy it that way. Not to mention, nobody does digestive pacemaker surgery in the city where I am <Columbus, Ohio> I'd have to go to Cleveland, or Cincinnati, Ohio. For one, I just started my new job, so obviously I can't afford to take off work for that, for two, I don't have the insurance for it now, so I'm stuck. Any and all advice would be greatly appreciated, although there isn't much I have not done already that I know of!
Thanks again for the link and the tips Greta. Take good care all.
Pam in Ohio
http://groups.yahoo.com/group/RefluxSurgerySupport/
(The group I made on yahoo)
MEDICAL PROFESSIONAL
It is possible that the Nissen fundiplication has failed and is causing the reflux to return.
You can do various studies to see if this is the case - such as an upper GI series, repeat endoscopy or a 24-hr pH study. However, you should have another visit to your surgeon to see if a repeat surgery should be considered.
In the meantime, you can discuss whether adding an H2 blocker such as Zantac or Pepcid to the Aciphex is worth trying.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
You can do various studies to see if this is the case - such as an upper GI series, repeat endoscopy or a 24-hr pH study. However, you should have another visit to your surgeon to see if a repeat surgery should be considered.
In the meantime, you can discuss whether adding an H2 blocker such as Zantac or Pepcid to the Aciphex is worth trying.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
If your insurance covers it and you are willing to travel, there are two exceptional thoracic surgeons at the University of Pittsburgh Medical Center. You can find their contact information on the Web. Their names are Rodney Landreneau and James Luketich. Luketich is more well versed in minimally invasive techniques. The experience and expertise of the surgeon is very, very important in increasing your chances of a good outcome from surgery.
Good luck.
Good luck.
Also, if you do consider having surgery redone I would ck into the site of "US News and World Report" and find a good training hosp. that ranks very high in digestive disorders...I can tell you that as of July 2003 the top three in the country are #1 Mayo Clinc, #2 Cleveland Clinic, and #3 john Hopkins Univ.....Make sure you get a surgeon that does MANY of these and has a very high success rate....Tessa
it sounds as if you have a failed Nissen procedure. Given the amount of trouble you are having, it's worth considering re-operation. Reoperative reflux surgery is more difficult than the first time, and needs to be done by someone expert in it.
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