Don't know what to do

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Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1178
   Posted 7/24/2013 5:31 AM (GMT -6)   
I'm really at a loss now over what to do. I was previously on Nexium 40mg twice a day but still with symptoms. I decided to try reducing it to 20mg twice a day because I didn't like being on so much medication and didnt notice much difference. Next I tried going to Omeprazole 20mg 2x a day and after a week my heartburn started to get worse.

I waited a week to see if it was just coincidence but it has continued to be bad, so I go back to the doctors this morning and ask to be put back on Nexium.

The dr says because Nexium is so expensive they will only prescribe it for another 8 weeks, then I am stuck with Omeprazole. So I asked to be referred to a surgeon as even with Nexium I am not symptom free and I cant take it living like this anymore.

But the problem is all my tests have been normal except for a rolling hiatus hernia seen only by endoscopy, which he said showed up because of the wretching.

My LES pressure is normal, my pH test was normal despite being symptomatic, but the GI said I hadn't been off PPIs long enough (only 5 days - couldnt take longer tbh), my barium swallow showed no reflux and no hiatus hernia despite my having heartburn throughout.

I just don't know what to do, I am terrified of going through with surgery only to find out that it doesn't solve my problems, but I feel like I have exhausted every other possibility of why I have heartburn almost constantly. I don't have Eosinophils, tried cutting out different foods with only limited easing of pain but probably due to acid levels. I'm on anti-depressents for anxiety and haven't had any episodes of anxiety for months which always tend to make it worse.

I am 100% convinced it is my esophagus and nothing else, it constantly feels inflamed and the only thing that makes it feel better is to eat something and feel something neutral and plain in my esophagus which eases the pain a little. Of course, eat too much and it only makes it worse!

I'm at my wits end, don't even know if I will be offered the surgery or not. Is there anyone out there that had the same problems as mine? Constant (and I mean literally constant, severity fluctuates) heartburn, tests showing nothing wrong, medication only partially effective even at extremely high doses that has had success with surgery?

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 7/24/2013 7:24 AM (GMT -6)   
Hi Andy,
 
I am in a somewhat similar position to yourself, and do indeed know the sheer frustration that this condition brings. I fell ill after a holiday in April 2012, I was then diagnosed with IBS, and they eventually found a small sliding hernia < 1cm - since then I have had nothing but constant trouble and pain.
3 endoscopies (another due on Friday) show no redness no erosions, no sign of reflux at all. I had a ph study done last year I was told it was normal - no reflux below 5 with one episode at 8 - De Meester score was 0.3, sphincter pressure was 13 - I'm told I don't have reflux, even though Barium swallow showed mild reflux then.
 
I don't get heartburn but I do get a huge pressure in my chest, pain behind my breastbone that has landed me in a&e twice, and now I have swallowing problems, and a sore throat.
 
I am now wondering whether I have in fact NERD and either motility problems or spasms - I will find out more when I get another barium swallow.
 
Sometimes it pays to do your own research, query everything and research like crazy!
 
I'm a little concerned that an endoscopy showed a "rolling hernia"  - if it is indeed a rolling hernia and not a sliding hernia - I am under the impression that this is in fact a paraesophageal hernia and should really be repaired pronto. I would ask one of the moderators on the site for more information on this. Did they also tell you the size of the hernia?
 
I would also read up on non erosive reflux disease.
 
Hope that you feel better soon.
 
 

Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1178
   Posted 7/24/2013 7:50 AM (GMT -6)   
In my first endoscopy they just said "large" and I remember the clinician saying "wow thats a big one" but it wasn't diagnosed as rolling.

In my second endoscopy he said it was 2cm rolling hernia, but I got the impression that it was only moving up because of the wretching. I do the drop from toes trick quite regularly and relax my abs so I think this keeps my stomach down, but it does worry me a bit because I have heard that the paraesophageal hernias can be life threatening
GERD, Anxiety, Depression, Rolling Hiatus Hernia, Esophageal Hypersensitivity

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 7/24/2013 8:04 AM (GMT -6)   
A large hernia is not 2cm - a large is usually 4-5cm. When did you have your first endoscopy done and where? And on your 2nd endoscopy  a rolling hernia can cause trouble and frankly I am rather amazed that no-one has discussed this  issue with you.
 
I think you should contact your GP/or consultant and ask specifically if it is indeed a rolling hernia - and yes from all that I have read - it needs fixed.
 
I would read through some of the postings on this site and see if anyone else has had this type of hernia and I would ask them for all the advice that they can give - do not be afraid to politely question your doctors, they are supposed to be there to help you.
 
Do let us know how you get on.

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 7/24/2013 8:34 AM (GMT -6)   
How are your bowell movements? Have you had a gastric emptying test?

Teacherman
Regular Member


Date Joined Jun 2013
Total Posts : 172
   Posted 7/24/2013 8:43 AM (GMT -6)   
What's thevdifferencevbtween nexium and omperazole?

fight-gerd
Regular Member


Date Joined May 2013
Total Posts : 57
   Posted 7/24/2013 12:04 PM (GMT -6)   
As far as I know
 
Omeprezole is generally 20 mg.
Protonix (Pantoprozole) is 40mg.
Nexium is 40mg as well.
 
I think that is the only difference.

Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1178
   Posted 7/24/2013 12:06 PM (GMT -6)   
My bowel movements are usually quite regular, but i take pro kinetics and pain killers which cause constipation so i have all sorts intefereing eith it! Nevrer had the stomach emptying test.

After my first endoscopy i read all about hiatus hernias and started tedhniques at home to fix it, thats why i think by the time i had the barium swallow it showed nothing and the second endo was only 2cm but also specifically said it was rolling.

The dr who did my second endoscopy didnt say i anything about te rolling hernia being dangerous but did strongly suggest surgery rather than stay on high doses of nexium for life. Maybe the hernia was in the back of his mind but he didnt want to alarm me.

A dr once said to me nexium is like a double dose of omeprazole, but for some reason i find nexium eases the pain more.

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 7/24/2013 1:13 PM (GMT -6)   
Hi Andy,

Nexium is a much stronger ppi, so that perhaps is why it is working better for you.

I am interested to know what techniques you did at home to reduce your hernia?

Prokinetics like domperidone - not only empty your stomach faster therefore reducing your acid levels but domperidone also helps tighten the les sphincter.

Please do enquire whether you have a rolling hernia, and discuss options with your consultant.

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 7/24/2013 1:20 PM (GMT -6)   
Andy-

With the sliding/rolling hernia that alone can cause non regular reflux. It's possible it's bile reflux as well. Was you PH study the dual one or only for acid?

You have been on high doses of PPI and still having symptoms with a sliding/rolling hernia, that may well be enough to qualify you for surgery if that is the route you wish to take. It also may be necessary if the hernia is bad enough.

Teacherman- The meds are different in Nexium, Prilosec, Dexilant, and Prevacid.

Andy, have you tried Dexilant or Prevacid? I had much better results with those 2 vs Prilosec.
Also if they use too much air when doing the EGD they can cause a temporary large hernia. An EGD isn't the best tool for seeing a HH because of this.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1178
   Posted 7/25/2013 5:10 AM (GMT -6)   
I think my pH was only acid. I have been considering whether to ask for the impedance test as I couldn't take being off ppis for 2 weeks like they asked for a redo of the pH test.

I had 10 acid reflux episodes, 1 significant, with DeMeester of 10.4.

My esophagus is weak, about 24 pressure measure vs normal which should be 30-140 so I think the full nissen is not an option, but partial one could be. Given my hernia I think I will go for this option. I have been putting it off because I love weightlifting and dont think Ill be able to go hard at it in the gym after, but my quality of life is suffering too much now and if I cant be on Nexium after 2 months then I dont really have an option.

I have tried pantoprazole but that was rubbish, nothing else except nexium and omeprazole tried.

The techniques I used for my hiatus hernia are quite simple but I think very effective.
- The first is to drink about 1/2 - 1 pint of warm water in the morning. Then stand on tip toes and drop hard onto your heals repeatedly. The weight of the water will drag the stomach back down.
- The second is to massage the stomach down, there are youtube videos showing how to do it. I dont do this often though as I dont really like to mess about with it like that.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/25/2013 10:01 AM (GMT -6)   
Andy,
 
Check out this link:
 
http://gerd.emedtv.com/prilosec/prilosec-vs.-nexium.html
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



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