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Hope?????

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GERD & Acid Reflux
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Posted 9/22/2010 1:26 PM (GMT 0)
How do you people find hope in your daily life? This disease kicks my butt day-in and day-out. I'm only 30 and I feel like I'll be lucky to make it to 60. I think I have LPR, I never get heartburn. I do have swallowing issues and a lot of throat clearing throughout the day. I don't take medicine presently, but have considered getting back on. It's all so controversial. I can take the medicine (2x a day for those with LPR???), although I can't stand the fact of taking ppi's, let alone 2 a day????? From what I hear, this leads to malnutrition, stomach polyps, anemia, etc... Or I can not take the medicine and play the risk of getting barretts and go down that road... Pick my poison? Is that what this has come to? How does anyone with this problem find any hope????

I just want to live the longest I can possibly can. I had an endoscope in February of this year which came back fine with no damage. Can anyone advise me on what would be a good route to follow? I just don't want to look back and think that I made the wrong decision on my treatment. I keep reading that ppi's shouldn't be taken long-term.

Hope please!!!!! shocked

Posted 9/22/2010 1:52 PM (GMT 0)
Good Morning,

The long-term safety of PPIs is not completely known. Clinical experience with these medications ranges from 3 to 20 years. All of the identified studies addressing long-term use have follow-up of 10 years or less. 

Most often, your doctor can diagnose LPR by examining your throat and vocal cords per endoscopy.  The voice box is typically red, irritated, and swollen from acid reflux damage. This swelling and inflammation will eventually resolve with medical treatment, although it may take a few months. If you had a scope in February perhaps you need to see a second GI physician to see what is going on now.

If you were on the PPIs in the past did the medication work for you ?

There is always hope IMHO that things will get better.  Keep on talking with the members here in the forum as they have amazing "hope"  to share.

Kindly,

Kitt

Posted 9/22/2010 2:17 PM (GMT 0)
I have an appointment with an ENT doctor tomorrow, however it didn't even sound like the lady I scheduled it with knew what LPR even was! So I'm going into this appointment with the understanding that they will not have the tools to diagnose this.

I was taking Nexium for about 4 months. I was doing okay. There were just so many side effects. I can live with the side effects, but that would be unfortunate. It took a while for me to reach a point where I felt somewhat normal. I eventually developed the difficulty swallowing (it's not really too bad, just noticeable). At that point, the dr said that I could take double the dosage if I'd like, but it would be just for my personal comfort. At that time, I wanted to try doing it the natural way and see if it would be treatable without medicine. I can't really compare how I feel now with how I'd be taking double the dosage. I really don't want to take 2x the dosage.
Posted 9/22/2010 3:45 PM (GMT 0)
Hi philip,
I totally get your reluctance to take PPI's, and take them twice a day. I have taken PPI's for twenty years, and PPI's twice a day for probably at least 5 of them. I'd rather not have had to take them, but if they're the only thing keeping you comfortable, then that's what you need.

There is always a risk-benefit ratio that needs to be considered. A doctor of mine once quoted Thomas Aquinas when discussing risk-benefit:
"If the highest aim of a captain were to preserve his ship, he would keep it in port forever."

So, think on it, and decide whether the risk of taking PPI's is outweighed by the benefit of feeling better. Many, many people are on double dosing.

If the Nexium gives you side effects you don't like, there are many others that you can try. I've found Protonix to be very free of side-effects, but everyone is different.

Good luck finding answers to your problems. I, like you, had very little reflux with very big consequences. I wasn't one who had food refluxing or huge amounts of acid. Unfortunately, I did have asthma, and it didn't take much reflux to get it out of control.

Hope you find an answer soon.
Take care, and hang around. There are lots of great people here who have experienced similar problems. We'll do our best to support you through this. We know it's not fun.
Denise
Posted 9/22/2010 4:01 PM (GMT 0)
Hi Denise,
Thanks for your reply. I'm glad to see that there are people still making it through this struggle with 20 years of experience taking them. Honestly, I thought that I could beat this disease by going the natural approach, but I second guess myself constantly and eat a diet of fruits, vegetables, meat, yogurt and nuts. I only drink water. However, even though I follow this diet, it still seems like I have minor symptoms. They're not horrible, but I still do have that swallowing issue and throat clearing. I just don't understand why taking PPI's would help, if I'm sticking to an alkaline diet. Seems to me that it would be doing the same thing that I'm doing by sticking to this diet. I don't know and sadly, I don't think my doctor knows/cares.

Do you have to get any injections of minerals (malnutrition) like b-12, iron, calcium or anything like that? As you can see, I'm a planner (I HATE IT) and my mind is trying to set a foundation.
Thanks again.
Phil
Posted 9/22/2010 8:19 PM (GMT 0)
Hi Philip,
I take calcium with magnesium and D in liquid form, but have never taken B vitamin shots. I've had blood work and have no iron deficiencies.

I'm a lot like you in having to be fully informed and prepared for anything!
Good luck in your decision.
You're in a good place at this forum. There are a lot of very experienced and caring people here.
Hang in there!
Denise
Posted 9/23/2010 3:37 AM (GMT 0)
My brother is only 28 and had to have the fundoplication this year. I know that is a very young age but his eating habits are horrible due to the type job he does - He works at the top of grain elevators in Nebraska so eats on the run all the time. He just didn't want to live on PPI's either plus his insurance wouldn't cover the one that helped a little. I used to be on Nexium but it quit working last fall after a very bad bout of asthma and inhalers with steroids that burned my esophagus. I had to switch the the generic of Protonix - Pantoprazole twice a day and didn't notice any side effects. It's not fun being on meds but even with being on that plus Carafate and eating mostly soup and oatmeal I had to do something. I had numerous tests and my little brother paved the way for me to look for options. I just had the fundoplication 2 weeks ago. It was not fun and I'm still recovering but can now eat green chili without self combusting. I still have a tiny bit of acid reflux but the Dr. said that should resolve itself after the wrap completely heals. Some people do take PPIs for life but that's the exception I guess and not the rule. I'm hoping that will be my case and I had a very severe case. There is alot of support here - good luck with your quest for relief!
Posted 9/23/2010 4:39 AM (GMT 0)
Phillip have you tried drinking Apple Cider vinegar? I know this sounds bizzare but I find this very effective for indigestion. I put 2 cap fulls in a tall glass of water and sip it with my main meals. It really helps me. The other thing I love to take is Aloe Vera juice. 20mls in the morning and before bed is very soothing on my stomach. Some people hate the taste of it but I find it quite refreshing. Also try taking digestive enzymes with your meals. These help your natural enzymes digest your food in the stomach and prevents it from lying around fermenting in your stomach and creating reflux. Try not to eat at least 3 hours before bed so you go to bed on a mostly digested stomach.
All these remedies are based on the theory that for some people it is lack of stomach acid rather than too much that causes the LES to open at inappropriate times due to not enough digestion occuring in the stomach.
Keep posting here to keep your spirits up we all understand how you feel this is a frustrating condition.
Posted 9/23/2010 12:22 PM (GMT 0)
Hi Moo'sMum,
I do take the ACV and aloe vera. I follow all the guidelines for the gerd diet. I generally eat fruits and vegetables and when I splurge, it's usually for a peanut butter and jelly sandwich on wheat. I take a couple of digestive enzymes with my main meals. I still deal with throat clearing and mucous on my throat throughout the day. I also have a small pain in my right shoulder blade. Do you take medicine or are you trying to cope with this without? If you are doing without, do you still get symptoms of this awful disease?
Thanks much!
Phil
Posted 9/24/2010 12:48 AM (GMT 0)
Phil my pain turned out to be gallstones and I ended up having a blockage which caused pancrea*** so my gallbaldder had to be removed. I was taking PPI's when I thought my symptoms were GERD but stopped when they were making no difference at all. I'm not a huge fan of drugs and prefer to go the natural way where I can. To this day I still drink ACV and take the aloe vera juice to keep my tummy in tip top shape.
It's so miserable being uncomfortable and not being able to do anything about it but keep your head up you will get there.
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