Confused!

New to HealingWell, so bear with........

I first had stomach symptoms 4 years ago (burping, indigestion, pain and constant hunger). It was after a bereavement, so no surprise. As it didn't let up I went for a gastroscopy - this was (I was told) 100% normal. I then came off the drugs, due to side effects, took DGL and within a month was better. End of problem. Or so I thought.

Three years later the problem comes back again. DGL didn't work. Zantac didn't work. Omeprazole helped a fair bit. Got sent for another gastroscopy (which was a source of BIG stress as the sedation failed during the first one and left me awake and aware but unable to say so, and it was painful, so the thought of having another was way scary). Second gastroscopy was done under GA (yeah I know, big wimp......) and showed small hiatus hernia and mild oesophagitis. No H.pylori, no coeliac disease. One tiny tiny tiny bit of Barrett's oesophagus which was "not clinically significant" but scared me nonetheless.

So first question - if I had all those exact same symptoms 4 years ago but a normal gastroscopy, what was causing them?! And if I end up having the wrap surgery, how do I know it'll help, given that I had all those symptoms without having the hernia or the oesophagitis??!

Second question - why? Why do I have GERD? My BMI is normal, I don't smoke and never have. I barely drink any alcohol. I gave up tea and coffee. I have been wheat and dairy free for over 20 years for food allergies.

Does anyone get rid of this problem without surgery?! I am on DGL, aloe vera and glutamine - nothing is helping and the symptoms are 24/7. I am horrendously allergic to Omeprazole and all its cousins, so am taking Zantac high dose. I don't feel I can modify my diet any further - I've got nothing left to give up except breathing!!

All the tests that involve tubes down throat horrify me, but I haven't been told I need anything else as yet, not unless I end up needing surgery. The consultant seemed happy with the info he got from gastoscopy and the biopsies. He just said if I had to have surgery they would have to test my swallow first, which was enough to make me run for the hills! I was doing ok on omeprazole but have had to stop because of allergic reaction. I have food allergies and the anti acid drugs can worsen food allergies, so my reaction might have been to the drug or due to aggravation of existing allergies. Cons said surgery was a last resort.

Hi mudmagnetmum,

Welcome to Healing Well! Sorry to hear you're having so many problems! I hate to say it, but from what you've described, it sounds like you might want to consider surgery. If you're having that much discomfort, and you're trying all kinds of treatments to no avail, I'm not sure you can avoid those tests much longer.

As Joy said, the swallowing test isn't great fun, but it's definitely manageable if you get your mind in the right place (Zen is a great place to be). It's all mind over matter. Nobody loves that test, but it's a necessary evil.

I guess you just have to decide how long you can stand the feelings you have, and if you're willing to get the tests you need to determine what's goingon.

You're definitely in the right place!
Feel better soon!
Denise

That's a very good question, mudmagnetmom.
If you've had the symptoms, were you taking medications for them (PPI's)? If so, they will keep the gastroscopy normal. The acid is controlled and it doesn't do the damage. You can have reflux and a normal gastroscopy. All of my gastroscopies were normal, although I was having enough reflux to cause lung problems, thus requiring the surgery.

The manometry can't be done sedated, as you are asked to swallow a little water on command. Your swallowing ability is important if you're considering the surgery, as the type of wrap they do is dependent upon the strength of your swallowing reflex.

It's really mind over matter...it's very "doable", but you know your ability to handle things.

Good luck!
Denise

Post Edited (dencha) : 4/10/2011 11:29:21 AM (GMT-6)

Hi mudmagnetmum,
I suppose if your hernia was just starting to form it might not be obvious with an endoscopy. Did you have a barium swallow as well? That's usually the easiest way to spot a hernia.

You could see if you could take a mild sedation with the manometry. When I had mine, the tech said that they'd had to sedate some patients...it can't be out cold, but it might relax you a bit. Just a thought...you might ask.

They can place a Bravo capsule when they do the endoscopy, rather than give you a wired PH monitor. Some docs don't like the Bravo as much as the wired monitor, but many here have had it. That way you won't have to have a wire in your throat for 24 hours. It worth asking.

It's super important to know how strong your swallow is before surgery, because you need more swallowing force to get food through the wrap. That's the reason that it's such a big issue. A doc might not do the same procedure if your swallowing reflex is weak or not organized.

Good luck with all your testing and appointments!
Glad you've joined our forum.
Denise

mudmagnetmum

above...and in an earlier thread, you referred to side effects from omeprazole

im just curious cause i think (guess) ive experienced side effects too. i say "guessed" because unless i change just one thing...one med, one food, etc at a time, and keep everything else the same for at least a few days, its hard for me to know what causes what

but heres my 'guess"

yeah like you indicated on another thread, i experience low blood pressure too. that may be related to the dizziness.

before ppi s my blood pressure used to be 130 over 75, but now on omep i frequently hit numbers a little below 110 over 70... a few days ago 107 over 65... quick moves make me feel (feel) tipsy and fuzzy-headed. ( i say feel cause ive never fallen down and can still walk fairly straight)

and so while im not convinced its the omeprazole, im thinking of doing an extended regimen of h2 s to see if this changes.

does any of this sound familiar?

Mock Turtle,

Yes low blood pressure and "postural hypotension" (dizziness on standing after squatting down - which you do all day long with small kids around!!) was one of my side effects. My worst side effect was my skin though, and that was why I stopped taking it. My BP always was on the low side, but on the day I went for the gastroscopy it was 99/56 - I thought they might not do the general anaesthetic, but they did!

I'm occasionally dizzy on the Zantac (Ranitidine), but nothing like as bad as on Omeprazole (ppi).

You could possibly experiment (if your symptoms are well controlled) with what time of day you take the ppi - I took mine at bedtime, which was probably not the best time of day, blood pressure wise.

Mudmagnetmum, there is alternative to having the wire test. It's called the BRAVO. It is a special transceiver that is temporarily attached to the side of your esophagus with a small needle. It will fall off after about four days. You wear a special receiver around your waist for 48 hours.
I didn't want the wire test either and my gastroenterologist offered this option to me. He put it in when he did the EGD test on me. I could not feel the capsule in my throat and had no pain.

mudmagnetmum , said "....Looks like getting well is down to me then.........."

very true words, yep i have experienced the same thing, being sent back to the "gate keeper". many, (not all) of the specialists "dont wanna know ya" after they render their special service!

best of good luck to you!