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Old 02-14-2011, 12:05 PM   #16
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Re: PPIs don't control GERD anymore, why?

Hello Cookiebaxter,
So sorry to hear your daughter is sick. You said so much has been eliminated from her diet. Was that because she was allergic to it? There may be something she is allergic to that is setting off the attacks. That is what they are testing me for next month.

 
Old 02-14-2011, 02:13 PM   #17
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Re: PPIs don't control GERD anymore, why?

Hello cagirl44;

No she is not allergic to any foods but many foods set off the acid attacks. By a process of elimination we ruled out red meat and all the usual triggers such as citrus, fats tomatoes etc. which kept her free from pain for about 2 years. However, now any meat or vegetable upsets her also wheat and oats and because her CP means she needs to have all her food pureed it doesn't leave many options. We have been managing on dried baby foods for a month or two but even this is uncomfortable for her now. Good luck with your tests.

 
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Old 02-14-2011, 04:33 PM   #18
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Re: PPIs don't control GERD anymore, why?

So sorry to hear that. Wish I had some answers for you. I'll keep her in my prayers.
Hugs!!!

 
Old 02-16-2011, 11:25 AM   #19
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Re: PPIs don't control GERD anymore, why?

Cookie sorry to hear about your daughter. I can definitely relate to what she's experiencing, at least the GERD part.

The pain for me is pretty much constant now. In spite of what I eat I have it all the time. Sometimes not as bad, sometimes worse. Last nite I was up all nite tossing and turning, could not get comfortable. Right now I can barely sit up straight. Feels like I have a hot poker burning in my chest.

Some foods make it worse I guess but I don't notice that food causes it. I have thought about trying drastic diets like eliminating all dairy and wheat for 3 months or so and see what happens. I was tested for food allergies/sensitivities a long time ago and I never noticed much difference whether I ate the stuff I supposedly was intolerant to or not.

I am on Dexilant 60mg/day which I think is up there with Nexium 80mg/day as some of the strongest PPI you can take. My doctor is convinced that the acid is still being mostly blocked and I should not worry about my esophagus getting majorly damaged. However it feels every day like I'm burning it up.

I've read that they think some people have (or develop over time) a sensitive esophagus which responds in pain to even a little weak acid refluxing up into it. I'm hoping that I'm not going to develop more serious complications like esophageal ulcers, strictures, Barrett's .. but even if I don't I already feel miserable and can't go on indefinitely like this.

I have considered surgery but very ambivilent about it. Two doctors have told me that it may not help and may cause more problems. I don't really have the non-heartburn GERD symptoms which I've been told are more likely to respond to the surgery e.g. regurgitation, cough, etc. I guess alot of people still get acid refluxing and end up back on PPIs after surgery. I'm honestly confused about the whole thing.

I'm only in my mid-forties, I have alot of life to live. And I can't keep feeling like this every day. I'm open to any suggestions people might have, however crazy. I'm slipping into feelings of hopelessness about the whole thing. Sorry about my ranting but I'm really starting to lose my ability to cope with this. It's now been a whole year that I've had this pain pretty much constantly. Don't know how much longer I can take this.

My doctor mentioned tincture of opium but that it's expensive and doesn't work long term. Is anyone else on any daily pain management medication they would recommend?

Last edited by melkon; 02-16-2011 at 11:29 AM.

 
Old 02-16-2011, 12:04 PM   #20
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cookiebaxter HB User
Re: PPIs don't control GERD anymore, why?

Hi melkon,

I'm sorry to hear you're having a rough time of it at the moment. I can empathise as I also don't know what to try for my daughter next or even what options are open to us. I went to see our doctor today and asked about Sucralfate but he had never heard of it and said I would need to ask her specialist about it. Although very well meaning I don't think GP's are that well informed when it comes to reflux.

I'm going to stock up on all the herbals mentioned on this site, slippery elm, dg licorice, mastic gum, apple cider vinegar etc. to see if they will at least give her some relief.

Our consultant mentioned a liquid food where the proteins are easily absorbed that she could take instead of ordinary food to give her system a rest whilst it healed. I can't remember the name of it so have telephoned his secretary today to ask her to find out for me. I will let you know the name when she comes back to me.

We had good relief for 2 years after going thorough an elimination diet. Basically I just gave her what I knew suited her for a few days and then re-introduced foods one at a time each day until I found all the culprits of which there were many, red meat, fats, citrus, tomatoes and spices being the worst. We changed milk from full fat to skimmed and this also helped a lot. If you haven't tried this it is worth the effort. I do hope you have a more comfortable night.

 
Old 02-16-2011, 03:05 PM   #21
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gpinzone HB Usergpinzone HB User
Re: PPIs don't control GERD anymore, why?

Quote:
Originally Posted by melkon View Post
Cookie sorry to hear about your daughter. I can definitely relate to what she's experiencing, at least the GERD part.

The pain for me is pretty much constant now. In spite of what I eat I have it all the time. Sometimes not as bad, sometimes worse. Last nite I was up all nite tossing and turning, could not get comfortable. Right now I can barely sit up straight. Feels like I have a hot poker burning in my chest.

Some foods make it worse I guess but I don't notice that food causes it. I have thought about trying drastic diets like eliminating all dairy and wheat for 3 months or so and see what happens. I was tested for food allergies/sensitivities a long time ago and I never noticed much difference whether I ate the stuff I supposedly was intolerant to or not.

I am on Dexilant 60mg/day which I think is up there with Nexium 80mg/day as some of the strongest PPI you can take. My doctor is convinced that the acid is still being mostly blocked and I should not worry about my esophagus getting majorly damaged. However it feels every day like I'm burning it up.

I've read that they think some people have (or develop over time) a sensitive esophagus which responds in pain to even a little weak acid refluxing up into it. I'm hoping that I'm not going to develop more serious complications like esophageal ulcers, strictures, Barrett's .. but even if I don't I already feel miserable and can't go on indefinitely like this.

I have considered surgery but very ambivilent about it. Two doctors have told me that it may not help and may cause more problems. I don't really have the non-heartburn GERD symptoms which I've been told are more likely to respond to the surgery e.g. regurgitation, cough, etc. I guess alot of people still get acid refluxing and end up back on PPIs after surgery. I'm honestly confused about the whole thing.

I'm only in my mid-forties, I have alot of life to live. And I can't keep feeling like this every day. I'm open to any suggestions people might have, however crazy. I'm slipping into feelings of hopelessness about the whole thing. Sorry about my ranting but I'm really starting to lose my ability to cope with this. It's now been a whole year that I've had this pain pretty much constantly. Don't know how much longer I can take this.

My doctor mentioned tincture of opium but that it's expensive and doesn't work long term. Is anyone else on any daily pain management medication they would recommend?
Did they give you a manomerty to test your LES pressure? If its not working at all I dont think you have a choice but to get the surgery. I am experiencing chest pains now and they are intense yet my throat and esphogus are healed from diet and ppi. I have been taking amitripltylne for trapped air in throat feeling which helped but now I am getting chest pains for last 2 months and its are getting worse. It started off as dull pain but now has gotten more intense and is a burning pain. Always happends after eatting or drinking and stay with me for 30-90 mins. My doctor feels its vagus nerve issue but I hope I dont have visceral hypersensitivity of my esphogus.

Last edited by gpinzone; 02-16-2011 at 03:06 PM.

 
Old 02-17-2011, 01:42 AM   #22
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melkon HB User
Re: PPIs don't control GERD anymore, why?

Quote:
Originally Posted by gpinzone View Post
Did they give you a manomerty to test your LES pressure? If its not working at all I dont think you have a choice but to get the surgery.
Actually I did have the 24-hr manometry some years ago and strangely what it showed was that I have a pretty strong mean resting pressure on both my upper and lower valves. However it also showed a pathological amount of reflux episodes - like 5x more than the normal max. So I always wondered if my problem is not that I have a "weak" LES, but that I have some nervous system problem or whatever that keeps sending signals for the thing to relax all the time. I did notice that acupuncture helped me once and I thought maybe that's why (doesn't seem to help anymore though). I am open to surgery but have great misgivings about it and keep hoping they'll come up with a new procedure. I'm especially worried that I'd go thru all that just to end up with the same heartburn pain along with who-knows-what new symptoms. I'm at my limit symptom-wise right now.

Quote:
Originally Posted by gpinzone View Post
I hope I dont have visceral hypersensitivity of my esphogus.
I'm wondering the same thing about myself now. I've always had a sensitive esophagus. Certain foods just caused problems going down. Sometimes I'd have painful spasms and when I had full-blown heartburn episodes it was agony. For many years PPI's controlled my symptoms 95% however in the last year they just don't seem to be cutting it anymore. My doc believes they're still working but that I'm just more sensitive now to the little/weak acid that's still refluxing up.

 
Old 02-27-2011, 08:15 AM   #23
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cookiebaxter HB User
Re: PPIs don't control GERD anymore, why?

The last time I logged onto this website it seemed that we had come to the limits of medical science in solving my daughter's reflux problems. All PPI's had stopped working. I was not very optimistic about trying homeopathic medicines but when you're desperate you'll try anything. So, armed with aloe vera juice, slippery elm and mastika we began as the bottles instructed.

It's now been just over a week and I have to say the difference is nothing short of remarkable. Sure she's still on the PPI's but she's been able to eat properly for the first time in months and has even had red meat on two occasions with no problems. (She hasn't been able to manage red meat in over four years)

I just want to say a huge thank you to all who take the time to post information on what has worked for them. Through you guys we now have things back on track. And for all of you whose PPI's seem to have lost their effectiveness, it really is worth giving these remedies a try.

 
Old 02-27-2011, 08:41 AM   #24
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cagirl44 HB User
Re: PPIs don't control GERD anymore, why?

That's wonderful. So glad to hear she is eating and doing better. Hugs

 
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