GORDm reflux esophagitis, small HHm, depression - what would you do?
Posted , 9 users are following.
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.
The
1 like, 27 replies
brinal30613 syracusa
Posted
So sorry to hear about all your health issues. I am sure by now you would have had a lot of support from this forum, especailly Barrentts he knows so much, about this topic - and he is always here to help people. God bless him!
i was just wondering are you on any medication for the anxiety and depression?
syracusa brinal30613
Posted
Brinal,
I am not. My family desperately wants me to but I have also had some concerns with my kidneys lately so while on ppis, then last thing I want to do is to add anti-deprssives for kidneys to filter. My GP says kidney function is just fine but they still can't explain why the e-gfr, an estimate of the glomerular filtration rate, has gone down in 2 years from perfect 100 to about 75-80.
That is still considered within normal, and it can vary quite a bit with hydration, etc....but I had two lower values like this, both last year and this year....and that is enough for me to not want to throw extra medication To the kidneys. Both ppi-s and anti-depressives are known to affect the kidneys.
I am am seeing a nephrologist this week so he can run extra tests to clarify whether my kidney function is fine and the estimate is just a fluke....or whether I truly did experience some kidney function loss over the past years.
The lower value (77) came up after a few months post-pneumonia (with 2 rounds of strong antibiotics) and 3 months of anti-anxiety medication.
Nothfing else happened during that time to justify the drop. So my kidneys do react to medication, so I simply do not want to take it.
It it is why I am also apprehensive of long terms ppi use and I am considering surgery, as insane as it sounds.
syracusa
Posted
I then go back to TIF or other endoluminal techniques like stretta...and I think that even if this will provide acid control for a few years (some say even 10) maybe they figure out the endostim by then, and I can address this peace meal instead of with a radical step that can lead to disaster.
Maybe get 5-10 year from tif or stretta and later do endostim?
This is is the biggest nightmare of my life so far. I am afraid this will set in motion an Avalanche of physical and psychological nightmares that will separate my former normal life from a new life marked by no quality, just suffering and fear.
Barretts syracusa
Posted
Can you PM me the links to peer-reviewed articles on all the failure.
I haven't noticed anything "crossing my desk" and a quick search of Cochrane, PubMed, Jurn and Google Scholar haven't shown anything.
The biggest problem occurs if patients put undue stress on their operation too soon. At the same time, some exercise is needed to strengthen the muscles. The 20 year follow up study gives the most balanced view. After 20 years, 94% reported no more than occasional symptoms and, although 18% required revision surgery, 90% wer happy they had it. (Which is higher than TIF, STretta or Linx and they haven't been going for 20 years. )
syracusa Barretts
Posted
I PM-ed you. Thank you again.
brinal30613 syracusa
Posted
Syracuse,
how did you feel while you were on the anti-anxiety medication?
most of the medications have numerous health risks, which harm the kidneys, liver, etc. etc.
I am 57, and I have been on antidepressants (lexapro) for 12 years. There was also warnings about using this medication - causing problems with liver etc. I am also a diabetic so I have regular blood tests, my liver is normal.
I was diagnosed with Barrett's. 2 yrs ago. Had Nissan fundoplication surgery and repair if hiatus hernia, 11 months ago.
so happy that I had the surgery! Feel heaps better now, and able to eat almost everything. In moderation - small portions off course!
but what I am saying is that - for all the suffering I had been through with various health issues - the only reason I coped was because I was on the antidepressants. It controlled the anxiety and depression.
I just feel, if you were to go back on the anti-anxiety medication it will help you to cope with everything else that is happening in your life.
Fear and anxiety is a real killer! Far worse than the actual physical illness!
Researching and reading up too much on a illness, can make us paranoid! I've been there I know what it could feel like, we lose our peace and begin to fear the worst, our minds are injected with "what if"
taking care of your mental health will enable you to deal with whatever happens. And give you some peace and whatever you are going through - it might even improve some of your health issues. Most of our sickness comes from, fear worry and anxiety and stress.
vvvv syracusa
Posted
dear syracusa,
i know what you must be going through. there was a period a few years ago after my mother and several relatives passed away when i became very stressed about my own health. i now know that i was too anxious by any symptoms i got and looking back, i feel that i did myself more harm than good by getting myself over diagnosed and ending up with 2 surgeries which i may or may not have needed.
i also suddenly started with very strong acid reflux, something which i never had before. i was put on ppis for severl months and all kinds of antacid which did nothing for me. i was desperate and in great pain and was also afraid that all the acid was doing harm to my esophagus. to cut a long story short, i now have no more reflux, this was initially helped by eating carefully ( pl read the topic in this forum titled " how i cured my gastritis" the main contributor, ines, has a lot of good suggestions on how to use diet to control her pain which is also applicable to acid reflux).
diet helped me a lot initially when medication could not. eventually what did it for me is exercise. i do brisk walking for an hour or sometimes 2 hours in 2 sessions per day, taking in short quick breaths. i used to underestimate the value of exercise but not too vigourous exercise like walking and taking in short breaths (lots of oxygen) has done wonders. it is like a stagnant pond fermenting and putrefying and now has an aerating system. my circulation is better, my digestion is better, my colour is better and most of all my acid reflux is gone.
do check out the topic "how i cured my gastritis" by ines
all the best of luck
Vv
sometimes we think that things will just go on a downward spiral. our fears are our own worst enemies. give other altenatives a chance and do not opt for surgery first off when you still have time to try other less invasive options.
syracusa vvvv
Posted
vvv,
Thank you for your encouragement. I can't help but wonder though whether reflux esophagiti can be as easily addressed with diet as gastritis.
With reflux esophagitis, as long as the acid comes back up from the stomach due to the damaged sphincter, it doesn't matter what you eat.
I have been eating like a saint for over a month now and I don't see any improvement.
I do need to go back to light exercise but I literally can't being do depressed.
I wonder though whehter anyone has experienced worsening of heartburn on PPI-s. I have been on them for almost a month and I don't remember having such bad heartburn before.
vvvv syracusa
Posted
dear syracusa,
what really helped me was exercise. i mentioned the diet as an interim measure cos in my case the ppis did nothing for me so i was in constant pain. the only time i found relieve was to eat something that neutralised the acid. only when i seriously did my exercise, was i able to stop the acid reflux and now i eat everything. it's as tho i have never had acid reflux.
but i dont want to digress. what i hope you will do is to try to exercise seriously even tho it is just for a month and see if it helps you. at first, i was not convinced, how can exercise have any impact on acid reflux let alone cure it for me.
i urge you to give it a try. you have nothing to lose except some time. exercise is also known to relieve depression as the endorphones start working. i have had benefits to my health in many respects not just related to acid reflux.
what you can try doing is to walk briskly for half an hour in the morning and half an hour in the afternoon. whilst doing it, the important part is to take shallow breaths, breathing in twice and exhaling once. then try increasing the time to 45 mins twice a day. when you can reach an hour in the morning and 45mins in the afternoon you will start to feel relief and this will encourage you to do more.
this is how i started. i stayed on the half hour twice a day for too long and saw no benefit or relief but when i upped it to an hour a day in the morning and an hour in the afternoon it started to feel much better and have kept at it cos i feel so much better. but you must remember to breath in twice and out once, shallow breaths. it is the breathing that helps as it increases your circulation and oxygenates your body, this also alkalises it. exercise is know to alkalise ones body.
just make up your mind to give it a try for a month and if it does not work then stop but i sincerely hope it works for you
all the best
vv