on bended knee...help please!!!

[bweber]

Hey everyone,

This seems like a pretty cool site, and I couldn't help but join and post my situation. For the past 10 years I have been diagnosed with GERD/Acid Reflux. I have been on 5 different meds and am currently on Nexium. It used to be fairly managable and occasionally I would get a flare up which would involve awful burping up of acid, nausea, and vomitting. I would start downing Pepto like it's water and popping tums or whatever else I could get my hands on. Relief would come a couple hours later. This has progressively happened more and more over the past year and am tired of feeling peachy one minute, and like mud the next. So I go to the Gastro doc and he wants to do an upper endoscopy and ultrasound along with now taking my nexium two times a day. Now the ultrasound just about killed me. The guy pressed so freakin hard I had bruises across my belly for days! But today I had the upper endoscopy and the nurse said I was only back for 5 minutes and my hubby said the doc consulted with him and said "well there is no inflamation and keep taking the nexium." Left the room and that is all I was left with. I am feeling very frustrated right now...thinking this doc didn't do a thorough job and he is telling me everything is peachy and keep doing what I am doing. This is affecting my everyday life. I can't deal with this. It kills me...I can't sleep and I have probs through the day as well. If anyone can provide any insight, I would so appreciate it. *gets on knees* PLEASE HELP if you have any information that you even slightly think may help....let me know.

 

[cancer_survivor_06]

I would maybe consider seeing another doc. I know that the last thing you want to do is go through that again, but you might find someone who in the end will truely help you.

My story is not the same as yours but in the end the point is persistence pays off. In 2000 at the end of my pregnancy w/ dd6 I started getting these little white spots on the bottom of my feet and occasionally on my hands they were so irritating that I would go outside on the patio of our apartment which was a pebble type of concrete and I would dig my feet in to it to releive the itch. Finally I couldn't take it anymore and started to monitor it and realized I got it the most when I was stressed. I made and appointment w/ a doc and he tested me for RA, lupus, and one other thing but I can't remeber. In the end all of the results came out neg so the doc gave me a script for a steroid cream. Well I had no intention to rub a steroid cream on me daily so I dealt w/ it. In 2003 while preg w/ dd3 it got worse and I told my self after the baby is born I am going to do everything possible to find out why this was happening to me. A couple of months after have dd I started seeing a new PCP. I started seeing him monthly he sent me to an allergist first and I was told that I was allergic to green beans(which I eat 2x/wk), apples(I eat often), and chocolate(not a fan of choc) as well as a red oak tree. A couple mths after this I started getting really tired, which I thought was b/c of my current lifestyle(new baby+full time job working 5am-2 or 1pm-11/12pm+stress=lack of sleep). I cut back to part time then after about a mth I had to quite I just couldn't do it anymore. W/in two mths after quiting my job got extremely and after 8mths of going to the doc to find out why I had these miserable spots I found out that they are one of the most common misdiagnosed symptom of the cancer I have.

Sorry for this being so long I just wanted to stress to you to be persistent about getting something done that is right for you.

Best of Luck!

 

[Jill in Chicago]

I am sure you have already thought of this before, or are currently doing this, but have you visited an allergist? To me it is amazing how many things are inter-related. (Just as an aside more than 50% of my allergists patients are also on anti-depressants.) My oldest son, DH and I all have allergies. DH and DS also have horrible stomach/acid issues. Both are on meds for this now. Sorry I don't know what, but I am sure you have tried them all at this point.

My thought is to get totally checked out by the allergist and find out what you are allergic to. Many of us have minor allergies we are not even aware about, but your body is a "bucket" and it can only handle so many allergents. So let's say you have fall allergies and also have minor wheat and peanut allergies. In the summer you can eat peanuts and wheat no problem, but in the fall your "bucket" is already overflowing. Add the peanuts and wheat and you get an instant headache, or whatever other symptoms...

My girlfriend had horrible irritable bowel. It would make her vomit. She cut the wheat products almost totally out and the disease disappeared. It was also like a drug withdrawal. She felt horrible, like flu, for weeks as her body "withdrew" from that wheat.

Just tossing out some ideas to think about.

 

[bweber]

Thank you both for your replies. Seems the general consensus is to see an allergy doc to see if that has anything to do with it. I had never thought about that so thanks again. Do you know if insurance normally covers this?

Cancer survivor, what type of cancer was it? Wow that just goes to show you how things can be misdiagnosed. WOW what a shock.

 

[cancer_survivor_06]

Thank you both for your replies. Seems the general consensus is to see an allergy doc to see if that has anything to do with it. I had never thought about that so thanks again. Do you know if insurance normally covers this?

Cancer survivor, what type of cancer was it? Wow that just goes to show you how things can be misdiagnosed. WOW what a shock.

I was diagnosed w/ Stage 2B Hodgkins Disease in 04 and a year later I was diagnose w/ Persistant Stage 2B HD. Since the day they found the mass in my chest I have never had another problem w/ the spots/hives problem that I was having.

You can read more about it here. I haven't finished it b/c I started to get a little emotional so I will be finishing it soon.
http://disboards.com/showthread.php?t=1353791

 

[bweber]

Wow....I'm sorry you went through all of that....always something....and someone else is always fighting a bigger battle. Makes you think for sure.

 

[Christine]

bweber,

I also suffer from acid reflux and 'non-ulcer dyspepsia.' I have been scoped twice. I don't believe that your GI doc did anything wrong or is negligent. Maybe just didn't do a good job of explaining things.

First off, and upper endoscopy only takes about 5 minutes, and a colonoscopy about 17 minutes. These are very quick procedures.

I don't doubt that you have stomach issues but, yours, like mine, is not due to any evident disease process such as stomach ulcers, tumors, etc. You could very well have reflux but the reason that there is no inflammation is because you have been taking Nexium every day. This doesn't stop the reflux but it does stop the reflux from being caustic and damaging your esophagus. So, in that regard, the Nexium is doing its job.

I just had my last upper endoscopy in February. I have been on Prilosec and/or Nexium for 8 years. Like you, I have days were I'm fine and then, in an instant, I can be so sick and miserable.

I just got back from Disney and barely ate for fear of getting sick.

My doctor says that I have a disorder of the upper stomach. It is much like Irritable Bowel Syndrome that you hear that people have, it just effects the stomach. One of the major causes is Delayed Gastric Emptying syndrome, where the food does not leave your stomach as quickly as it should. My GI doc says MANY, MANY people have this, it causes acid reflux like symptoms, and there is really no "cure" for it.

My suggestion is that you have a few tests done:

One would be a test for Delayed Gastric Emptying. They give you some radioactive food to eat, put a geiger counter over you, and determine how long it takes the food to leave your stomach.

Another test would be for celiac disease. It is somewhat rare, but not as rare as they intially thought at this could cause a lot of digestive problems. This is mainly done through blood tests (which can give false readings though).

Good luck!

 

[arminnie]

I've had two other test not mentioned so far.

1. Tube down my nose to my stomach, taped in place with a computer device on my hip that I wore for 24 hours. I was told to eat everything but to keep a detailed record. This measured what caused reflux and when.

2. Tube down my nose to my stomach. I was on my back (maybe tilted back even) and had to take sips of water as they gradually moved the tube up. I think that measured the gravity effect and how far up something would come.

I also had surgery - lap. It worked for quite a while, but then I did start having to take Aciphex. I'm okay now EXCEPT if I eat nuts or chocolate right before going to bed. So I don't do that anymore.

I made that mistake about 4 times last year (slow learner here). I was up for at least an hour coughing up ACID which left my lungs terribly inflamed for weeks. A blowtorch down my throat could not have hurt more.

Wish me luck I have a CAT scan on 5/2.

Hi Christine - knew I would find you on this thread.

 

[Christine]

Wish me luck I have a CAT scan on 5/2.

Hi Christine - knew I would find you on this thread.

I would have been here sooner had I not been at WDW!!!

What's the CAT scan for?

As far as the other tests you mentioned, I am also aware of these but never had them. As far as my GI doctor is concerned, I *probably* have reflux (my first scope showed some irritation). He said that I could have all these tests if I wanted to have them and if they made me feel better, but that the end result is that there was really nothing he could do for me that he wasn't already doing. (And he's a nice guy and explained everything to me). I'm kind of "with" him on that one. If you can't fix it, why bother testing anymore? We know I have a stomach disorder, we know that it is not cancer or ulcers, so what's the point now? KWIM?

 

[arminnie]

What's the CAT scan for?

CAT scan is for my lungs which have been terribly irritated by the reflux. I had "spots" on my lungs last year. We know it is not cancer as the spots moved from one lung to the other. Pretty sure it is just the irritation from that horrible acid - hopefully I will have been free of that long enough to get them all healed up, and I can stop the albuterol twice a day.

 

[Christine]

CAT scan is for my lungs which have been terribly irritated by the reflux. I had "spots" on my lungs last year. We know it is not cancer as the spots moved from one lung to the other. Pretty sure it is just the irritation from that horrible acid - hopefully I will have been free of that long enough to get them all healed up, and I can stop the albuterol twice a day.

Hope that goes well for you. I have a co-worker who had acid reflux so bad that it has scarred her bronchial/trachea area and she has to get frequent dilations of the area.

 

[Ricky's Girl]

bweber Has your doctor checked to see if you have gallbladder disease? A lot of your symptoms sound similar to what I experienced several years ago. For about 2 years I had awful acid reflux especially if I ate chocolate or anything like spaghetti sauce. This didn't happen all of the time but when it did I would be deathly ill. The next day my back and rib area would be so tender I could barely stand to wear my clothes. I finally had an episode where I thought I was having a heart attack the chest pressure was so severe. My primary doc sent me for an ultra sound, like you, I could barely stand the pressure on my stomach during the test. The results showed gall stones. I went to a gastrointernist and he scheduled surgery. I had the less invasive surgery- lapro something or other. After about a week recovery I was as good as new. I can eat whatever I like and have had no "reflux" since. Good luck to you!