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To start, I will specify that I DO understand none of the forum members here are in my place and as such, they cannot make decisions for me. I am just curious about how people would approach the situation within my specific parameters, including mental health.
Any view will be much appreciated.
I am a 43 yo female (European but living in the US) who was diagnosed with GERD, reflux esophagitis (grade A/mild - said the dr.) and a small HH two years ago.
At that time I didn't fully understand the nature of this condition. I was just ecstatic to have been cleared of anything having to do with the "C" word - of which I am generally beyond terrified.
I also have GAD (generalized anxiety disorder) but have developed highly severe health-related anxiety over the past few years. The panic attacks that have resulted from various health scares since I turned 40 have been Indescribable. It seems to be ruining my relationship with my husband and children and greatly deterioriating my quality of life. Once I am cleared of a scary diagnosis (which my mind flies to IMMEDIATELY with any symptom that could ALSO be THAT), I get much better; but that's only until the next scare. I do not make up symptoms and do not just "imagine" things. They do happen - but turn out to be minor. For example, I recently had an "abnormal bleeding" episode. My mind panicked about uterine cancer until they proved it was just "perimenopause".
After I was diagnosed with GORD, I thought this was something temporary that was going to go away with the PPI round the GI had prescribed. I finished it and never looked back for almost three years. I did continue to have symptoms in the meantime, but I kept atributing them either to the HH (which I had been told is nothing major) or to a coming cold. Burps, sore throat, warmth in chest, food feeling like it's sticking. I even thought it was normal for everyone to sense some warmth in the chest coming from the stomach. I simply ignored these symptoms as minor and got used to them. I knew it had to do with the little thing I had been diagnosed a while ago but nothing major.
Recently, I had another more serious flareup of GORD. This time I went out there to read more about it - and I found out THE TRUTH.
It's not "minor". It doesn't just "go away" with a round of treatment. It is a chronic disease significantly linked to my biggest fear (the C word) - and one of the worst C-s, for that matter.
It is part of a continuum of digestive abnormality ranging from ocasional reflux triggered by a big meal to adenocarcinoma of the esophagus. Less serious stages (such as what my doctor called "mild GERD" can progress to something very serious. Mild GERD doesn't necessarily stay "mild", especially as people age. And apparently, I have been doing just that lately.
I panicked again. Went back to the GI doctor, he said "naaah...nothing major, get back on a round of PPI's and then do these rounds on and off. I asked "do these rounds on and off forever?". He said "yes, forever".
He discouraged surgery because it can work out pretty poorly. My GP also discouraged it.
When I asked about the root cause the GI said my reflux barrier (LES sphincter, diaphrtagm etc) is weakened. So it's a mechanical thing - and that spells "surgery".
1) I read everything about a lifetime of PPI-s and got scared. It doesn't control the reflux anyway - just the heartburn sensation.
2) I read everything about all surgeries currently available - it's terrifing no matter how you twist it.
Mortality rate less than 1% - and this is supposed to be reassuring when people hope to win lotteries with odds of 1 in a brazillion? Mindblowing.
I am not even sure how to read 1%.
1 in 100 people who get the surgery die? Or there is a 1 in 100 chance per one surgery event that that person will die as a result of it? Beyond scary.
3) I read about doing neither 1 nor 2 - and just maintain strictly all lifestyle changtes and patch up with "naturals", for whatever they are worth for someone with a mechanical, LES sphincter problem); but I am stil scared because this is just hoping for the best and still NOT controlling the reflux. Doing virtually NOTHING - when this disease is progressive.
I already implemented lifestyle, "saintly" diets and the works - and it hardly helps. Now that I am able to recognize these symptomns and I am actually paying attention to them, I know I have reflux and heartburn all the DARN time. I am not sure why my dr. said it's mild if I get symptoms with every single meal, no matter how perfect and small the meal is.
If I don't do surgery, I know I will be doomed to a lifetime of heightened anxiety and scare about how much this disease has progressed. Zero quality of life. No Barrets as of now, but will it stay like this forever if my esophagus continues the cronic exposure to acid (and especially other matter coming from the stomach which PPIs don't address?).
After all, the Barrets cellular change starts showing up later, early 40's is still too early to have developed.
I recently had my second endoscopy (with an ENT this time) because he was able to do it without sedation, through the nose. In the US, gastros put you to sleep and this terrifies me because with my mental condition, I am afraid I will never come back from the oblivion; so I said "no way" to another sedated endoscopy.
I just received a brief description of the lab results over the phone because I could no longer bear to wait until the appointment with the ENT next week. I begged the office to give me the results because I experienced another horrific panic attack over this.
Pathology is all good, the "no Barrets" status holds, but the person with whom I talked over the phone said the dr. saw a bit of redness/irritation at the bottom so I should still come to the appointment to give me his overall impression. I certainly will, with lots of questions - but it's clear it's the esophagitis again. Hopefully still grade A.
I had been on a PPI for 10 days prior to the endoscopy so maybe the esophagitis had already started looking better, if the dr. called it "just a bit of redness, irritation". So did the gastro 3 years ago when I was first diagnosed.
This means I am doomed to more or less permanent inflamation in the esophagus, or at the very least - cycles of inflammation and healing with PPI-s. This is very likely to turn worse as times goes by. One day it might turn to Barrets.
I am already driven to panic with the odds of esophageal cancer for females with GERD, complications (esophagitis) AND a hiatal hernia.
In fact, these are very strongly linked to Barrets. Had I only had GERD with none of the other factors, my mind would have dealth with the odds much better. But the inflammation and the HH add to the odds for things to go downhill in the future.
My family keeps telling me to let go, think of the "small odds" and just get medication as needed - like the drs. say. They keep telling me "this is what all normal people do - and they just don't think about the small odds".
This is excurciating for me becayse my mind doesn't worj like this no matter how much I try. I keep needing to simply "fix" it.
Prevent the reflux from coming up in the first place - period.
I have been 100% consumed with the lack of a decent options for months now. I am severely depressed. My husband is desperate, I can't talk to anyone anymore. This has ruined my life.
I feel like I need to do something. I don't want to look back years from now, after receiving a Barrets' diagnosis, and to regret having not had the courage to do surgery.
Horror stories abound on the Net about the outcomes of these surgeries. Then I think the enemy of "nothing scary yet" is "fixed" - just like the ennemy of "good " is "best" And I get scared again.
It's a horrible mental cycle. What would you do?
Thank you so much.
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