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Getting Really Discouraged

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GERD & Acid Reflux
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Posted 8/31/2011 9:20 PM (GMT 0)
I have been struggling with really bad reflux for the past two years. I was getting a little better then my symptoms got worse and I had to go to the ER two times in one week. I had been taking Nexium 40 mg once a day, carafate before meals, Maalox and/or Pepcid as needed. I went back to my GI specialist last week and he told me to continue with the Nexium but to take 20 mg Pepcid at bedtime every night and to come back and see him in 2 months. Well, he is on vacation until after labor day (it seems everyone but me is on vacation but that's another story). This morning at 4 AM the heartburn woke me up. I guess the meds need to be increased but I can't call him or ask anyone what to do now.

 I am just so miserable and tired of this. The heartburn really bothered me this afternoon too. I am being so careful about what I eat. The people I work with talk about going to the beach, barbeques, picnics, nightclubs every weekend, and what do I do on the weekend? If I'm not in the ER I'm in church praying for an end to my suffering, or I am in bed reading a book trying to feel better, or I am sitting on the couch alone watching TV. I have no money because I have used up all my sick days and vacation time and didn't get paid for two weeks. I am going to have to leave my apt and look for a room to rent. I have no family near by that I can stay with. This is crazy, my life is going downhill. I was going to a therapist but I don't always feel well enough to keep appointments.

So here I am. I just don't feel things are getting any better and I am really discouraged. I don't want to be in this pain and discomfort for the rest of my life. How much medication does a person need to not feel this awful pain and does it ever get better? My diet now is really bland and restricted. I went gluten-free, dairy-free and soy-free, in addition to avoiding every thing they tell you to avoid. But still no relief.

Posted 8/31/2011 9:30 PM (GMT 0)
You may want to consider having the surgery to repair your LES.
Posted 8/31/2011 9:56 PM (GMT 0)
Hi there,

I agree with Joy about exploring surgical options.

Another kind of strange suggestion: make absolutely, positively sure that you take your Nexium AT LEAST an hour before eating. In 4 months of near hell it's the only thing that's given me any relief. I take one about 1/2 hour after breakfast (which is usually Cream of Wheat) and then make sure not to touch anything besides water. Funny thing was, I THOUGHT I was waiting an hour before this round of Nexium but I wasn't.

Sorry if you've already tried this. If you're still suffering this much I would go back to the doctor and inform him that your quality of life (those are important words to use in this situation) is rapidly declining and that you don't feel medication AND lifestyle changes are helping you.

Best of luck to you, honey. I hope you get some relief soon.
Ashley
Posted 9/1/2011 1:39 AM (GMT 0)
I have heard such mixed reviews about the surgery it makes me hestitate, but perhaps I should look into it more seriously. I certainly can't continue like this.
I take my Nexium at 7 AM and wait at least an hour before I eat breakfast every day. Do you think it's better to eat breakfast first and then take it?
Posted 9/1/2011 2:16 AM (GMT 0)
Hi aminasunsetpark,

Sorry you're having so much trouble! Definitely continue taking the Nexium before breakfast, not after. Do you have most of your trouble during the day or at night? Really 40mg Nexium once a day isn't a lot. I read that you started taking some 20mg Pepcid at bedtime.

I can tell you what my doctor prescribed when I was having a lot of trouble (prior to my surgery)
40mg Protonix before breakfast
40mg Protonix before dinner
300mg Zantac at bedtime.

Rather than taking the Pepcid at bedtime, you could try taking it before dinner. If you're not being helped with the medication it's definitely time to see the doc. Too bad you can't get in earlier.

The Carafate is great...I'm a real fan...however it can interfere with absorption of medication if you don't space it 2 hours before or after you take meds.

As far as the surgery goes, it's not something to take lightly, but if you're suffering and nothing else is helping, it's definitely a great option.

Like you, I was afraid to have the surgery and suffered greatly for over four years before I finally realized that I had to at least try it. Fortunately, although my symptoms were atypical, I was helped greatly by the surgery.

While I have a few quirks post-surgery, but they are far superior to my suffering before I had it. I'd have it again in a heartbeat if I started getting reflux symptoms again.

Good luck. I hope you start feeling better very soon.
Take care,
Denise
Posted 9/1/2011 2:34 AM (GMT 0)
Personally didn't have the greatest luck with the Dexilant when it came to side effects but it did work better for me than the Nexium. I was told the Nexium doesn't last near 24 hours, the Dexilant a bit longer. Maybe a change of meds could do the trick.

The words I used with my Doctor before they finally found I also had gallbladder issues was "my quality of life is crap (not the word I actually used) and I want to lay down and die".......that did the trick. Quite sure the sobbing and full page of symptoms didn't hurt either. Write down everything in the day, so you can go back in armed. If this Doctor doesn't do anything, find another one!
Posted 9/1/2011 2:39 AM (GMT 0)
hi,

iv been sufferin gerd for almost four years, i have been on nexium 40mg for 3 and a half years. im getting really disheartened with my progress as there seems to be no improvment. i can not go longer than one day without nexium and if i do i experience extreme pain uncomfortablness and genuine depression as i feel i can not eat, drink water (it sometimes makes me feel worse) or even hold down a conversation without heeving.

im only 21 years old do NOT consume alot of fatty , fried foods or caffiene.

can somebody please explain to me about this surgery? i have talked to my doctor about wanting to stop the mediction but she just dismissed it and said if im not experinceing any bad side affects jsst continue taking them. i want to be permanently better.

id be gratful if someone explained the surgery as i have never heard of it.

thanks so much =)

Posted 9/1/2011 7:04 AM (GMT 0)
Unfortunately GERD doesn't care who you are or how old you are--I'm 22 and I've been suffering much like you.

Medication that reduces the amount of stomach acid you produce helps a lot of people. But if the valve that keeps acid in your stomach isn't working right, reducing the amount of acid isn't going to fix the problem. That's where surgery comes in. The Nissen fundoplication takes the gastric fundus (a flap of tissue near the top of your stomach, and wraps it around the junction of your esophagus and stomach, tightening it. This results in a much stronger and more effective valve, solving the root of the problem.

You don't mention what testing you've had but assuming you've just been taking meds, I would start on the testing route NOW (as it can be months and months long).

If you've just been seeing a general practitioner, get them to refer you to a gastroenterologist. That doctor will almost certainly perform an endoscopy. The endoscopy can confirm the diagnosis of GERD by observing inflammation and the esophageal junction. They might find a hiatal hernia (where part of the stomach is poking up through the diaphragm. This would be a good thing, as hernias can be easily repaired during surgery and are generally responsible for a lot of GERD symptoms. They will also do biopsies to rule out serious issues like cancer (don't get worried, you almost certainly don't have it), and they will probably look for helicobacter, a bacteria that can cause GERD and stomach cancer, and is generally easy to eliminate with a combination of antibiotics.

After the endoscopy, the gastro doctor may do more tests or may refer you to a surgeon to do more tests. The other tests include esophageal manometry (tests your swallowing and lower esophageal valve competence), 24-hour pH (gold standard for measuring reflux), and barium swallow (can visualize reflux, but more importantly makes sure you can swallow well enough to tolerate surgery).

After all of this is done and you qualify (at your age, I am sure you swallow well enough to qualify), you will finally be able get the Nissen and look forward to a better life.

Good luck!
Posted 9/1/2011 3:08 PM (GMT 0)
I remember all the way back to my late 20's when I started trying to "adjust to life" with acid reflux and throwing up. I'd get really skinny and my nerves would fall apart.

Same thing in my 30's - this time it was chalked up to food allergies.

In my 40's it was supposed to be all "hormonal" and in my 50's it was menopausal.

By the time I turned 60 there was not much to blame it on and I finally faced the fact that I had GERD and had it bad.

Meds didn't help, diet didn't help, lifestyle changes didn't help.

I went to my GI doc in late July and told him I was ready to cash in my chips unless he knew of something to help me.

He suggested Nissen Fundoplication and I had it about 5 weeks ago.

It has not been without its challenges and I'm still having a great deal of problems but I don't know if I would have been able to continue on with my life with the acid eating my esophagus and throat and sinuses alive.

At just five weeks post-op I'm not perfect or even near it as many people on the forum are at the same time after surgery but I am better all in all and am trying to be patient till the very, very long 6 month healing time has progressed further.

My big problem is nausea and still some sour stomach which everyone and my surgeon assures me will eventually go away. I had diarrhea before the surgery and still have it afterward but not as bad. Lots of gas and burping and the swelling post-op has been very painful for me but everyone is not alike.

I'm living for the day that I'm symtpom-free but am still mostly glad I had it done.

Good luck,
Rita
Posted 9/1/2011 8:36 PM (GMT 0)
Hey there Amina,

I take the Nexium after breakfast only because I have never refluxed in the morning, even if the trigger I've eaten is from the night before. I always reflux in the late afternoon/evening.

Someone on this marvelous site suggested that I take it closer to when my symptoms hit and luckily it worked for me. I agree with Denise that it is generally better to take it in the morning but late morning works best for me, personally.

Best of luck honey. I hope this nightmare is over for you soon!
Ashley
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