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ppi's not working!

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Posted 1/4/2009 6:07 PM (GMT 0)
does anyone know what other grim options are out there for me now?

ppi's are not helping me

my heartburn/Gerd -- oh, which has now created chronic esophagitis (and we all know where this will lead) has stayed horrific

iam to meet with yet ANOTHER specialist ---  and ill be going on my esophageal tests ( in which i hear they are wonderful to experience!)

and upper gi series and etc...

iam currently on nexium 2x daily for a week now -- surely i would of noticed some relief with that kind of medicine at that dose.

so depressed now...

my options are slimming ---  dying of cancer is not scarey to me -- its living with this 24/7 burning pain in my chest and throat that is too much to deal with!

any ideas?

 

Posted 1/4/2009 8:59 PM (GMT 0)

I am so sorry you are living with this chest pain 24/7.  I so wish I had an idea to help you out but know I will pray for your new physician to come up with the right mix.

No dying here my friend.............the world is a better place because you live within it.

Take care and gentle blessings.

KItt

Posted 1/4/2009 9:45 PM (GMT 0)
Dear saddaze, welcome and don't despair. Not all medications work for everyone; for example, Nexium made me much, much worse!, same with Prilosec. Prevacid was much better and Protonix was the best, so don't give up on these just yet, but try a different one instead. You may ask about adding in Zantac for a short term adjunct to help get things under control.

Let's talk a bit about the tests; Are they a walk in the park..no, but I can think of a hundred things that are worse! If you have to have the tests go in relaxed if possible; there are ways to deal with the insertion of probes (as in the 24 hr ph and the manometry) that make it easier, and once these things are done...they're done! They provide the Dr.'s with a lot of important information so it's worth the discomfort. Notice please, that I said discomfort; these do not cause traumatic life events, they are just tests that are uncomfortable. Once you're scheduled for tests, let us know, we can give you some tips and coping skills to get your through them.

Take control of this illness; stay with the good people here for help and information!
Keep in touch,
Janice
Posted 1/7/2009 2:53 PM (GMT 0)
Sorry you are ailing. My advice to you would be to explore the mind-body approach in addition to working closely with your medical team. An approach that has worked very well for me is to try to figure out why I have the symptoms that I have and whether it is my mind or spirit trying to talk to me. What is my dis-ease? Why am I uneasy? If your body is trying to talk to you through your symptoms, then your attempt to fight the symptoms could make them worse...your body, in effect, wants to fight back harder with worse symptoms. This is an unproven theory, but many people are finding relief through this approach. I suspect that if you went to a good counselor and talked about anything that is bothering you in your life and why your body might be mad at you, your symptoms might subside. Doing something like this while continuing your other treatments could give you a breakthrough. If what you are trying now is not working, here is an alternative. Relatively cheap and safe. The mind has incredible power over our bodies; all pain (by definition) lives in the brain (which is why drugs like morphine work). So, integrate your mind and soul into your treatment, and it may help. It helped me a great deal. For more on this, see the work of John Sarno MD or TMS theory. Best wishes and take care.

riverotter
Posted 1/10/2009 1:27 AM (GMT 0)
One thing these doctors are not telling you about these protoonix or nexium..etc,

You have to take them 30 minutes in the morning before you eat..then when you eat it activates the medicine..If you dont take it like that it doesnt work..I hope that helps everyone..

you also have to change your diet and exercise ..If you dont do these things..Its not going to work

You have been givin advise from

MAJORTOM nono

Posted 1/10/2009 2:52 AM (GMT 0)
lol major tom..very good advice...all true and wise...thank you
Posted 1/20/2009 4:07 AM (GMT 0)
Hi saddaze,

I have a question... since you have esophagitis, are you having any problems swallowing? ie: food getting stuck/caught in esophagus. I have esophagitis so I'm just wondering. If you have to do an EGD, it's not so bad since you are under general anesthesia. The barium swallow is okay. The barium sulfate doesn't taste good at all, but you can do it. The worst part of that test is the gas crystals; only because you can't burp. I'm sorry to hear about your unfortunate circumstance. Though my case sounds very similar to yours :(

I heard at a vitamin store that aloe vera juice will help heal your esophagus. I'm going to try that, and maybe you should too.

Posted 1/20/2009 6:28 PM (GMT 0)
Hi GS

Yes ido have a lot of trouble swallowing and keeping food down .... it is worrisome.

i have had used aloe vera juice... i hear conflicting things about it - like it can worsen gastritis and esophagus issues... use it carefully because it is a stimulant .. use for a week or two than stop for a week or two .. thats what ppl in the know have told me about it.

thank you for your input on my tests. i will keep everyone posted on my progress
Posted 1/21/2009 4:25 AM (GMT 0)
hi saddaze, I'm considering the Fundoplication (Nissan). Like you and all, GERD sufferers, I'm sick to pieces of pills. Has anyone had this procedure?
Posted 1/22/2009 9:43 PM (GMT 0)

Another thing most doctors don't tell you is how you eat.  It wasn't until my cardiologist talked with me that I found some real relief (and even then under stressful periods I will get extreme reflux).  The thing my cardiologist told me about GERD is that you should ALWAYS eat meals at the same time every day and NEVER miss a meal.  Why?  The reason is, your stomach is used to getting food at specific times (the times you normally ate when you felt good) and so it ramps up the acid (which is why it is important to take the ppi's 30 minutes before a meal).  If you don't eat the stomach will keep expecting to receive food and keep pumping out more and more acid.  So, eat a little something even if you don't feel like and eat your meals at the same time every day.

Marburg

majortom said...
One thing these doctors are not telling you about these protoonix or nexium..etc,

You have to take them 30 minutes in the morning before you eat..then when you eat it activates the medicine..If you dont take it like that it doesnt work..I hope that helps everyone..

you also have to change your diet and exercise ..If you dont do these things..Its not going to work

You have been givin advise from

MAJORTOM nono

Posted 1/22/2009 11:15 PM (GMT 0)
camagu, welcome. Many of us have had either the Nissen or the Hill repair and have been very happy with the outcome. Sillylilly (Caroline) had the Hill, it's performed in the Northwest primarily, Seattle and maybe Portland. I had the Nissen at Cleveland Clinic and while I followed much of what majortom espouses, the fact remained that my LES was failing and nothing I did would stop acid from being refluxed into my esophagus.

You must take the self help measures that are suggested, diet is huge as are the other lifestyle modifications and many can be "cured" by do so. Many, however, have a structural defect, and no amount of medication or lifestyle modifications can fix that structural defect. That is when you need to look at the surgical route.

The path leading to the surgeries is filled with tests, doubts, fear and the recoveries are filled with set-backs doubts, fears, wondering (in other words, this is not a walk in the park and should never be approached as such), but the outcomes are worthwhile. For me it was an end to pulmonary damage, esophageal damage, vocal cord damage, etc. My life has been so much better since the surgery, and should something happen that I would need a re-operation, I would do so.

Find the best surgeon you can, that is the best advice any of us can give you!
Posted 1/23/2009 6:46 AM (GMT 0)
I just wanted to say thank you to evryone who "writes" in to this column. It is helpful to know others who know exactly what you're going through.By the way, I just read For Dummies book on GERD and heartburn. It was very helpful.Has anyone else read it? Carol
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