girlneffy
06-10-2006, 12:40 PM
Ever since I was a little girl I had reflux of sorts. I can remember taking a 6th grade math test and feeling the burning go up and down my throat. I was taking tums on a daily basis since then.
I thought that everyone had this issue and never thought of it. Because I had it my whole life I never had any reason to think any different. The time I realized that it was not normal was when I was in nursing school. At that time after learning about the damage GERD can cause I decided to ask my doc about it.
Just off of my symptoms I was prescribed ranitidine at a dose of 150mg a day, this did nothing more than the tums did for me. Very short lived relief.
I went back to the doc and she increased me to 300mg a day and things still did not change at all.
I let this go on for a few more years until I had received my first ulcer (unrelated) at that time I had a swallow study done and found that I had a small hiatal hernia. At that time my doc put me on a PPI for GERD. Still did nothing, in fact I think I preferred ranitidine purely for the cost factor.
After complaining to the doc that I have constant burning day and night, she said it must be stress because nobody has GERD so bad that medications do not provide relief.
I graduated college 30 pounds heavier and the symptoms actually became quite severe. I started to have vomit literally project out of my mouth when I would bend over, I would wake up in the middle of the night choking on reflux, I could not work out easily either as it would make my symptoms more severe. At the age of 23 I was sleeping upright in a chair.
I went to a GI and they did an EGD, sure they saw my small hiatal hernia and nothing more, we did another medication change.
After another 2 years of medication changes, I had tried them all, nothing controls my reflux.
I was still sleeping in the chair, I stopped having sex with my husband due to symptoms, and I became sleep deprived. This reflux is truly affecting my life.
I learned about the reflux surgery and inquired about it with my GI. He said well we have to do more tests.
I did another barium swallow which showed spontanious reflux and reflux going up to my mid esophagus.
I did a gastric emptying study which showed delayed gastric emptying.
My esophagus was working correctly.
Everything was looking great for surgery until I actually did the Bravo 24 hour PH study. Apparently acid reflux is shown as a ph of 4.0 and below. Well every time I felt reflux it was a PH of 9.0 or even higher.
I was declined surgery and even told that I DO NOT HAVE REFLUX. I did have 2nd and 3rd opinions as well.
Two years later, here I am. Last month I was hospitalized because I could not swallow...anything! I had esophageal cellulitis. I had stopped taking all reflux medications because my GI swore to me I had nothing wrong with me and I was not actually refluxing anything that could be damaging to my esophagus.
I had only stopped the medications for 3 months before my esophagus was sore tore up that it caused the cellulitis and a 6 day hospital stay.
By complete chance and great luck there was a resident GI doctor put on my case. He is actually writing his thesis on the misdiagnosis of acid reflux and something called non-acid reflux. He said that I likely have both and this is why I failed my Bravo PH study.
After pumping my up with a severe amount of acid controllers, well above the suggested prescribed amount I actually started feeling better. This was only a temporary solution as the mixture of the medications can cause other problems if taken for longer than a short term.
A few days ago I had a very uncomfortable test done called a 24 hour impedence study. This measures acid and non-acid reflux. When the nurse inserted the catheter though my nose into my esophagus and finally into my stomach to measure my PH of my stomach. My PH was 1.7
Which is just slightly higher than the PH of battery acid a PH of 1.
She then positioned the catheter into the correct place of my esophagus and watched in amazement as she could read my refluxes of a PH of 0.1-2.2 She told me that she sets up these tests a few times each day and has never seen such low PH levels.
The cath stayed in for only about 15 hours. I had several severe episodes of acid reflux that I could monitor and then several episodes of the feeling of reflux when the contents were more of a base. The thing about impedence testing is that it can actually read both. This was to be a 24 hour test, however, some of my refluxing became so violent that it pushed the catheter out of my esophagus into my mouth. The test ended at that moment.
Normally, results take two weeks for the doc to read them. The nurse downloaded the information and rushed it to the doc because of the surprising results.
I reflux more than 90% of the time, my average PH is 2.2, and my lowest PH level was 0.0
I have been approved for surgery and was told that I have the worst cast of ACID and NON-ACID reflux that the team could even find in any form of documentation.
I am sharing this story because I think it is important for all of us GERD sufferers to know about. We know our symptoms are bad, even if test results do not show that.
I thought that everyone had this issue and never thought of it. Because I had it my whole life I never had any reason to think any different. The time I realized that it was not normal was when I was in nursing school. At that time after learning about the damage GERD can cause I decided to ask my doc about it.
Just off of my symptoms I was prescribed ranitidine at a dose of 150mg a day, this did nothing more than the tums did for me. Very short lived relief.
I went back to the doc and she increased me to 300mg a day and things still did not change at all.
I let this go on for a few more years until I had received my first ulcer (unrelated) at that time I had a swallow study done and found that I had a small hiatal hernia. At that time my doc put me on a PPI for GERD. Still did nothing, in fact I think I preferred ranitidine purely for the cost factor.
After complaining to the doc that I have constant burning day and night, she said it must be stress because nobody has GERD so bad that medications do not provide relief.
I graduated college 30 pounds heavier and the symptoms actually became quite severe. I started to have vomit literally project out of my mouth when I would bend over, I would wake up in the middle of the night choking on reflux, I could not work out easily either as it would make my symptoms more severe. At the age of 23 I was sleeping upright in a chair.
I went to a GI and they did an EGD, sure they saw my small hiatal hernia and nothing more, we did another medication change.
After another 2 years of medication changes, I had tried them all, nothing controls my reflux.
I was still sleeping in the chair, I stopped having sex with my husband due to symptoms, and I became sleep deprived. This reflux is truly affecting my life.
I learned about the reflux surgery and inquired about it with my GI. He said well we have to do more tests.
I did another barium swallow which showed spontanious reflux and reflux going up to my mid esophagus.
I did a gastric emptying study which showed delayed gastric emptying.
My esophagus was working correctly.
Everything was looking great for surgery until I actually did the Bravo 24 hour PH study. Apparently acid reflux is shown as a ph of 4.0 and below. Well every time I felt reflux it was a PH of 9.0 or even higher.
I was declined surgery and even told that I DO NOT HAVE REFLUX. I did have 2nd and 3rd opinions as well.
Two years later, here I am. Last month I was hospitalized because I could not swallow...anything! I had esophageal cellulitis. I had stopped taking all reflux medications because my GI swore to me I had nothing wrong with me and I was not actually refluxing anything that could be damaging to my esophagus.
I had only stopped the medications for 3 months before my esophagus was sore tore up that it caused the cellulitis and a 6 day hospital stay.
By complete chance and great luck there was a resident GI doctor put on my case. He is actually writing his thesis on the misdiagnosis of acid reflux and something called non-acid reflux. He said that I likely have both and this is why I failed my Bravo PH study.
After pumping my up with a severe amount of acid controllers, well above the suggested prescribed amount I actually started feeling better. This was only a temporary solution as the mixture of the medications can cause other problems if taken for longer than a short term.
A few days ago I had a very uncomfortable test done called a 24 hour impedence study. This measures acid and non-acid reflux. When the nurse inserted the catheter though my nose into my esophagus and finally into my stomach to measure my PH of my stomach. My PH was 1.7
Which is just slightly higher than the PH of battery acid a PH of 1.
She then positioned the catheter into the correct place of my esophagus and watched in amazement as she could read my refluxes of a PH of 0.1-2.2 She told me that she sets up these tests a few times each day and has never seen such low PH levels.
The cath stayed in for only about 15 hours. I had several severe episodes of acid reflux that I could monitor and then several episodes of the feeling of reflux when the contents were more of a base. The thing about impedence testing is that it can actually read both. This was to be a 24 hour test, however, some of my refluxing became so violent that it pushed the catheter out of my esophagus into my mouth. The test ended at that moment.
Normally, results take two weeks for the doc to read them. The nurse downloaded the information and rushed it to the doc because of the surprising results.
I reflux more than 90% of the time, my average PH is 2.2, and my lowest PH level was 0.0
I have been approved for surgery and was told that I have the worst cast of ACID and NON-ACID reflux that the team could even find in any form of documentation.
I am sharing this story because I think it is important for all of us GERD sufferers to know about. We know our symptoms are bad, even if test results do not show that.