Hiatal hernia, GERD, and medication symptoms… I want surgery.

HI @programmer and welcome to Mayo Clinic Connect. From mine and my families experience, Mayo wants to order all new tests when you become a patient there. They specialize in the unknown so they want to make sure all testing is done correctly so they don't miss anything.
Here is an article you might find helpful. https://www.drugwatch.com/proton-pump-inhibitors/alternatives/

Have you tried PPI alternatives?

Hello @programmer,

I'm glad to know that you are interested in getting another opinion from Mayo Clinic. They are great for dealing with hard-to-diagnose issues and great at treatment modalities.

You've mentioned that PPI meds are not helpful to you and also make you feel sick. I'm assuming that you are having nausea? I have taken PPIs for a number of years and a GI specialist just recently told me the most effective way to take PPIs is first thing in the morning, 30 minutes before eating breakfast, with a full glass of water.

This method has been the most effective way for me to take PPIs and really makes a difference.

I hope that you post again and provide an update on how you are doing. Do you have an appointment scheduled at Mayo yet?

I take my first dose of PPI first thing in the morning with at least a glass of water and an hour before I eat. I take my last dose at least an hour before bed and at least 3 hours after my last meal.
I don’t feel heartburn that often but I do have what feels like esophageal spasms sometimes due to acid and the hernia also seems to cause some of my dysphasia… weirdly enough, being on my right side elevated by a wedge pillow and raised bed seems to provide optimal swallowing of my saliva as I am in bed at night and makes the pressure in my chest feel less tight possibly… possibly indicating the hernia is to blame for in large part for my dysphasia that is variable throughout the hours, days, weeks, and months.

I try to avoid anything that might be a trigger food even though I don’t really feel heartburn or reflux that often but sometimes I taste the acid in my mouth, or some kind of non-acidic weird taste on such high doses of PPI.

I think, possibly due to chronic constipation, like my mom has, and the weight lifting and unloading trucks for most of my young adult life while going to university, and playing brass instruments from about 12 years old to 18 years old, really set me up for this.
Note: daily miralax use has rid me of my constipation so that is hopefully no longer an issue as far as abdominal pressure.
My mom has a hiatal hernia that seems to be fully or mostly asymptomatic so there is possibly some genetic component and I sped things along being so active.
I want to do as much pre-op testing as is needed to fill out anything else, but due to what I have experienced and had done already medically, I think the hiatal hernia is the issue.
I have a smaller body and frame so the 3cm hiatal could very well be the major issue.

This all being said, I think repair of the hernia, as many side effects as it can cause, my be my only chance to correct the issue and return to a somewhat, hopefully fully, normal life.

Edit: I am only 29 years old and have had these issues since I was 27, possibly a little before that. I have had a healthy body weight almost all my life… usually my weight gets too low if anything, especially since the dysphasia has kicked in.

Also, I meet with my GI doctor on May the 3rd to fax my information and hopefully get a referral. They already indicated surgery was probably an option, I just don’t want it at my local hospital and would like to get a better understanding of what is making my hernia grow and what is causing all my issues/what would be the best surgery for me and I think Mayo will have a bed chance of success than the place I am now.

Thanks for sharing more about your situation, @programmer. You've really been proactive in dealing with these issues and trying to find ways to be more comfortable.

I hope that you are able to get an appointment at Mayo soon, Will you post again with any questions or updates?

Good luck with it all . I went to 5 Gastro Dr’s in 2 states and then Mayo finally took me ( took 6 months to get off waitlist and then 3 more months til appt ( zoom appt first since I lived 2.5 hrs away from Jacksonville, FL). Got in Oct 2021 . Spent 4 k out of pocket , did a few more tests in 2 days . Got same and a couple new diagnoses. Still they couldn’t help me . I didn’t want to go on another antidepressant or see a speech therapist for my Chronic Gatstritis, Esophagitis, class B GERD, small hiatal hernia , small polyps on stomach lining , diverticulosis, chronic huge wet belching over 1000 x a day night , IBS . So now I sit just suffering 8 years and non for the better . I’ve done pretty much all the tests , I’ve done all elimination diets all the Gastric herbal remedies they sell out there . Holistic approaches . CBD , acupuncture, hypnosis. Nothing works . I cry just looking into my refrigerator because everything makes me sick . I feel for you and hope they can get you fixed up and feeling better .

Hi, I have reflux but have only consults with doctor. He thinks I have a hiatus because what I told him so he put me on 'Pantoprazole'. The side affects include bone lose. I'm trying to find out hoe bad this is since I am 76 yrs old. and physically fit. The doctors don't do the simple test so I have a phone consult with a specialist on August 9. A long ways away when I 'm living on gavisgon.

@programmer , @hopeful33250, and all...
Good for you, Programmer, for taking responsibility for your health...and for being proactive. Not easy. And, at your age you have a great chance of vastly improving your life and future.

I go to Mayo Florida for gastro, vascular, lots of other help. I have Gerd, take dexilent now with good results, have Barretts Syndrome and Shatzke Ring. Had a balloon procedure to stretch the area. Have less issues now. Lots of gas, but I'm 75 years old! Gasex really works. Hiatal hernia is like yours, but I'm old and avoid surgery. At your age, I'd go for it in a heartbeat.

I sleep on the left side most comfortably re abdomen issues. Have splenic and thoracic aneurysm. I too have upper abdominal spasms and at times my hernia feels like it gets caught or twisted and I have to stretch out very straight to stop the pain. Quite painful. Docs are ignoring this for now as I have so many other issues to address.

Again, congrats. I hope some of my info helps as you walk this crazy journey. Blessings, elizabeth

I haven't been able to find out if the medication 'Pantoprazole' is okay to take or is it determental to my bones. Any thoughts.

@heisforme2 and all...Hello....I can relay my personal experience with pantoprozole. I took it daily for several years with good results a d few or no side effects. It can, as can all these types of drugs, cause bone issues, but I never had a problem and it worked well for me.

I had severe osteoporosis when I was only 35. I'm 75 now. At that time, it was rare for that age and docs didn't know what to do with me. I took oyster shell calcium and bones improved....even tho I was told I'd be in a wheelchair in 5 years. Nope.
I refused. Got better with care and now latest scan classified me as with osteopenia, left hip worsening...I spend 1+hours 2x weekly in 95 degree water therapy pool for wonderful exercise and relaxation/pain control.

So, I will take pantoprozol if needed. Doc changed to dexilant
after couple of endo procedures, to see if it helps. It does, so I'm using it now.
Long way around to say I liked it and no problems.

I hope it works well for you-
Be blessed..elizabeth

Thank you so much for your response, it helps a lot. I do not feel any side effects at this time however I am being tested for spine problems with MRI'S etc. I am 76 yrs and have been weight training etc for many years. I am now having problems with my calves in that they are in pain eveen after a short walk. In order to walk any distance I must stop and start. When I was 70 I was able to run 5 miles. This whole thing may be caused by an injury I endured when I was about 18 years old. We shall see. Thanks again.
The acid reflux problem and my doctor wants me to see a specialist for that as well but I only get a phone call in mid August.