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Gerd

flagbabyds

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flagbabyds Collaborator
flagbabyds
Posted

so as many of you know, i have been kinda awall the past year or so from the boards.

I have been in the hospital for a lot of this time, and have also been busy with school and stuff. My most recent hospital stays have been because of my HORRIBLE reflux.

Everytime I eat, I must take phenergen and zofran just to keep the acid from coming up, and most of the time it still does. You might be thinking, why phenergen and zofran? well because I have tried every reflux medicine there is. I was on prevacid for a year and it started making me sick, then i switched to zantac 150, and i am still on zantac but up to 8 times a day, which is 4 times the maximum dosage on the bottle. As you may know I am also off corn and soy, so that eliminates most other meds. Here's the list of those I have tried

1. prevacid

2. zantac

3. prilosec OTC

4. prilosec prescription

5. protonix

6. karafate

7. gastrocrom

8. nexium

9. tums

while in the hospital, they mix and match the IV meds, and those work AMAZINGLY, but whenever i am dischaged on the oral meds, they make me violently ill, or they don't do anything.

and we have called the companies of all the other meds, and they either have corn or soy in them. My new GI doc (the celiac specialist at Stanford) is now trying to make a drinkable palleable solution of IV Protonix that I could drink, but we're not sure on the progress he has made.

My mom wanted them to do a central line, and do daily IV of the antacids/PPIs, but they don't want me to be in clinic every morning to get that since it is a daily med, that would be too hard to arrange.

Right now we are leaning towards surgery, Laparoscopic Nissen Fundoplication, but there are a lot of side effects, and it could go really badly. But really it is my only option, I am off of caffeine, chocolate, acidic fruits, greasy foods and mint.

Really we are down to out last possibilites, I have an appt with a surgeon in August, but they said that i might not be able to have surgery for a couple months, and that would be during school.

But because i am still really sick, it's basically our only option.

Does anyone have ANY advice for treating GERD at home? or has anyone gone through this surgery? one of my hospital roomates had it when she was a baby, and she had serious complications, which led her to be on feeding pump for 8 years.

I've had the BRAVO PH testing, which showed the higest level of GERD, and the manometry testing, which showed normal movement in my esophogus, so i am a candidate for surgery.

thanks for letting me vent at the least :D

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ravenwoodglass Mentor
ravenwoodglass
Posted

I wish I had some good advice for you. I too have had problems with GERD and at nowhere near the troubles you have had and it was awful. I do know that out of all the meds they prescribed, and many were the ones you list, all I ever got relief from was pepto bismal and being gluten free. I wish I could do something to help and I hope you are able to get some relief soon.

jerseyangel Proficient
jerseyangel
Posted

Gosh Molly--I'm so sorry you're having to deal with all this...

I have gastritis and have flare ups of reflux--I don't get it constantly. A glutening will cause it, and sometimes it just happens.

I tried Prevacid, but it didn't agree with me. I don't have near the amount of problems with it as you do, and I pretty much eat bland foods, and tough it out. No help from me!

I hope that it all goes well, whichever they (and you) decide to go with.

Jodie2DQ2 Apprentice
Jodie2DQ2
Posted

Have they made sure you don't have thrush? I had horrible gerd before going gluten free and was ok for a few months and then got it real bad again. I then began to have problems with yeast infections as well. I could not take any of the gerd medication as it made me so sick. However, I had been telling the doctors all year that my tongue was all coated and they said nothing. I was treated with Difflucan for yeast infections and it is THE ONLY thing that helped this gurgling feeling up my throat.And it has actually cleared up my tongue. I think I had thrush from being on antibiotics last year for 2 months and as time went on it spread into my esophogas. Anyway, it is a thought. They could not believe the acid medicine was making me feel worse! Jodie

mamaw Community Regular
mamaw
Posted

I know two people who had the surgery but it helped neither.So sorry you are going through this, it is most difficult to treat. I will say find a VERY GOOD holistic person & try that..... that is what has helped the two I know the most. They are not recovered but certainly they are much better than 6 months ago. Eating has become bearable now. Sorry I didn't bring good news but that is where I would head too.......

I'll say a prayer that you find help.

blessings

mamaw

kevieb Newbie
kevieb
Posted

molly, my youngest daughter, sylvia, had a lap nissen fundo done just before she turned 10 months old. she has never had a single complication from it. she will be 4 in october. when they went in to do the surgery they discovered that she had a hiatal hernia---not very common in babies---we could have medicated her till her eyeballs were swimming and she would not have gotten better without surgery. at 8 months old, when we did the scope and ph probe, her esophagus was already getting ulcerated.

kassie and tianna both had reflux but are finally off of prevacid. i think it took about a year of being gluten free before they could quit the meds. tianna never had symptoms to begin with, but they discovered esophagitis when they did her scope to check for celiac. kassie was pretty miserable with her reflux---especially because it was causing her shortness of breath for awhile and we kept telling her it was probably anxiety that was causing the trouble breathing. prevacid relieved the breathing problems for her.

sylvia and kassie both had esophageal thrush, but it was not connected to their reflux.

i am having alot of reflux trouble right now, also. i am also considering having a fundo done. i just don't want to be paying a fortune every month for meds that change the ph level of my stomach for the rest of my life. i had a scope done in october that showed damage and labeled the reflux "severe"----but i didn't think that my symptoms were that bad. i had been having problems with food getting stuck, so they clipped the esophageal ring to widen the opening.

right now i feel like i have something caught in my throat for a lot of the day, like either i never swallowed my food completely, or it just won't stay down. there are times that i want to avoid eating because i don't want to get that sensation of food that never goes down all the way. i even feel like i have something in my throat when i drink liquids. i can't even bend to make my bed without reflux coming back up. i used to get really bad chest pain that went through to my back, up my neck, and all the way up to make my teeth hurt. i am not having pain like that right now, but i am starting to get a little bit of uncomfortable sensations in my chest.

one of my sisters had the surgery years ago without complications. my brother-in-law had the surgery several years back. he said that for about 6 months that he had trouble swallowing solid foods because his esophagus was narrow, but he has not had any complications since then.

sylvia cannot throw up when she gets sick, so she wretches, which is a little un-nerving for me but doesn't seem to bother her too much. she can burp, so she doesn't seem to get problems from bloating.

by the sounds of it, it really sounds like surgery would be your best bet. i am hoping to have a fundo before the end of the year (because of insurance coverage) maybe we can compare notes. i will have to go out of town to find a surgeon---i don't trust our local one. keep me posted on what happens and what you and your parents decide.

  • 1 month later...
Cat5 Newbie
Cat5
Posted

I am so sorry to hear of al of the troubles you are having with your acid reflux. I never had any troubles with this until about a year ago, which was about 9 months before I was diagnosed with Celiac disease.

Pills and surgeries are not an option for me as I'm the biggest chicken on the planet when it comes to going to doctors and I have full blown panic attacks every time I have to go, but that's a whole 'nuther issue.

I google'd natural cures for acid reflux and found 2 that have worked for me so far (knocking on wood)...raw garlic cloves and plain yogurt. I know its a milk product and some can't tolerate it, but I eat about 4 tablespoons of Dannon plain yogurt about every other day and it has helped me.

I add the raw Organic clove of garlic to my foods and yes I probably stink to high heaven but who cares when you're my age those things don't matter anymore (to me anyway). If I feel better, I'm a lot happier person.

I also eat Very small portions at meal time now and I think that has been a huge help too.

I also read that drinking more water would help, but its been my own experience that the actual weight of the water in your stomach can stretch out that espophagus and make the acid worse.

Sugar will make the acid reflux much worse I do know that.

One other thing I read was that Magnesium might help with acid reflux too, but I've not actually tried that one yet.

Good Luck to you and I do hope you find some relief and get well soon.

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