How to handle stress and work life with worsening digestive issues and surgery.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

EJohn
Regular Member


Date Joined Jul 2014
Total Posts : 62
   Posted 7/23/2014 3:04 PM (GMT -6)   
Hi all, as a result of worsening GERD symptoms, my quality of life has decreased significantly in the past few years. I would like some opinions on what my next steps should/could be. I think its possible that the situation has become 'too clouded' for me to think about it properly anymore.

Brief Timeline:
Ages 6-18: Occasional acid reflux and indigestion.
Age 18: Frequency of symptoms increases to weekly/daily.
Age 19: Started my first PPI. Currently taking Prevacid 30mg, 2 times a day.
Age 22: Acid reflux is constant without heavy doses of PPIs. Right sided abdominal pain begins as a result of an emotionally damaging situation. Daily pain since.
Age 25 (current): Symptoms continue to worsen despite radical lifestyle changes and medication. For years, I've been steadily improving my diet, and for months now, I've literally had it down to fruits, nuts, and veggies, but my symptoms continue to worsen anyways. I tried several home remedies like probiotics, apple cider vinegar, a gluten-free diet for 1 month, a lactose-free diet for one week, etc. and none of those things worked.

In the most recent year or two, my symptoms have totally gotten out of hand - worse than I thought was possible for acid reflux. There are long stretches of time (hours) where my acid reflux is so bad, all I can do is just sit and think about how awful it feels - I can't watch TV or do anything other than focus on the discomfort. If this happens at midnight, I end up staying up until 4-7AM sometimes.

Unfortunately, with years of ongoing pain and inconvenience, I've let myself reach a point where my mental health has started deteriorating - I've become much less social, I either sleep way to much or way too little (0-18 hrs), I have become very apathetic, depressed, etc.. I'm also worried about my worsening job performance. If I 'get the boot' for poor performance or quit in order to focus on my health, I'm unsure how I will continue to receive affordable health care and put a roof over my head. In an emergency situation, I guess I could live with my parents, but this is highly undesirable for me at this point.

How on Earth am I supposed to deal with my worsening symptoms, continue to perform well at my job, go through with this surgery and the potential complications of it, and remain happy/positive? I've talked to several general doctors, a few GI specialists, and a psychiatrist, so I am actively seeking as much professional help as possible. I know the Nissen Fundoplication is a next step, but I'm worried about the complications. I don't know how much more I can deal with if something did go wrong or how my job might be affected by a long recovery. Also, for reasons that are hard to explain, my abdominal pain makes me hesitant about having surgery - it seems like the surgery wouldn't really do anything to fix that, and that maybe there is another problem that needs fixings that is the real culprit.

I'm guessing some of you have been at wits end with your medical condition(s) (maybe even relating to GERD and the Nissen Fundoplication surgery?). I would greatly appreciate it if you could lend your insight about this ongoing situation.

Thank you for reading.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5029
   Posted 7/23/2014 7:17 PM (GMT -6)   
Welcome to the forum EJohn.

So sorry you have been suffering so long.

Are you seeing a gastroenterologist now? Have you had a bunch of tests to see exactly what is going on? Have you tried keeping a food journal just to see if there's any possibility of food intolerances? (See the search box at the top of the page.) You need to know what's wrong to make an informed decision on surgery.

Personally, I didn't want surgery as long as I could keep my symptoms under control. Then there was an accident and I needed surgery. I'm so glad I got it!

Brianala
Regular Member


Date Joined Apr 2014
Total Posts : 91
   Posted 7/24/2014 9:23 AM (GMT -6)   
Hi EJohn!

I can completely sympathize with your journey!

I'm still relatively young and pretty physically active, and despite all kinds of changes in diet and lifestyle, and despite exhausting every PPI available to me over the years, I still have major issues with reflux.

My acid reflux is constant even while on two max strength PPIs daily, plus gaviscon, plus low acid, gluten free, paleo diet, plus exercise. Several endoscopies, a ph test, and manometry later and I've been diagnosed with a hiatal hernia, esophagitis, gastritis, duodenitis, and esophageal dysmotility.

Like you, I'm really wary of the surgery, afraid of side effects, and afraid of a bad result. But, honestly, with the quality of life I'm dealing with now - anything is bound to be an improvement.

The reality is that the posts you're going to see on this forum about complications from the surgery are a very small minority of cases. So many people get the surgery and move on with their lives, and don't even think twice to come back and post about their results, or share them.

I finally made the decision to move forward with the surgery because I realized that it was worth it to me, even if it only works for a few years. It's worth the chance to improve my quality of life, and it gives me a plan.

So, I guess ultimately it's up to you to decide if it's worth the quality of life improvement for you - but don't blow the bad experiences out of proportion when making your decision. Talk to your doctor, research surgeons, find someone with a really good track record and lots of experience, and do your own due diligence to give yourself the best shot at having a good result.

I hope you find a path to better quality of life! I know that for me, just making the decision to be proactive helped my mental well-being immensely.

Good luck to you, and don't give up!

Bri

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 7/24/2014 12:04 PM (GMT -6)   
Just to clarify: there is a world of difference between 'symptoms' and the objective pathology of 'GERD'

So saying "my acid reflux is constant" means a different thing to patients and Doctors. Doctors plenty of times see people whose symptoms are crazy, but whose objective GERD pathology as measured via testing is definitively not crazy.

I also have severe symptoms as a young guy but my GERD has been termed definitively not that serious. Oftentimes people with the worst symptoms have the least serious GERD, unfortunately (or fortunately). If your symptoms are absurdly ridiculous, go see a good GI professional and get tests done. Oftentimes (or perhaps even most of the time) severe symptoms do not indicate severe GERD.

ldrunner
Regular Member


Date Joined Dec 2013
Total Posts : 103
   Posted 7/25/2014 4:51 PM (GMT -6)   
Brianala said...

The reality is that the posts you're going to see on this forum about complications from the surgery are a very small minority of cases. So many people get the surgery and move on with their lives, and don't even think twice to come back and post about their results, or share them.


With respect, I would disagree with this.

The Nissen is major surgery that takes a long time to recover from. The first few months are like a rollercoaster ride and you get a lot of severe and misleading symptoms (including reflux) that convince you the surgery has failed.

People seek help as most surgeons seem incapable of telling the patient up front what the journey will be like. Instead we have to find out for ourselves and seek help and information from support groups like this.

Maybe surgeons don't tell their patients the severity of the surgery as "a positive frame of mind aids recovery" - well this fails when months later you still wake up with chronic reflux, cannot eat, miss work as you cannot stand up straight, and have pain from your chest to your groin.

Months or years later people may be glad they had the surgery and celebrate having no or reduced reflux, but I don't hear of people who have this surgery and just "move on with their lives". It is major surgery and your body will react appropriately.

ldrunner
Regular Member


Date Joined Dec 2013
Total Posts : 103
   Posted 7/25/2014 5:01 PM (GMT -6)   
...just to reply to the original post, I'm amazed at how strong the link is between stress and reflux.

I think my two main causes of post-surgery reflux are over-using my stomach muscles and stress, and the stress seems a lot harder to prevent.

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 7/25/2014 5:14 PM (GMT -6)   
Pull up the topic 'successful fudoplication members'. This is very encouraging.

Brianala
Regular Member


Date Joined Apr 2014
Total Posts : 91
   Posted 7/26/2014 10:11 AM (GMT -6)   
ldrunner said...
Brianala said...

The reality is that the posts you're going to see on this forum about complications from the surgery are a very small minority of cases. So many people get the surgery and move on with their lives, and don't even think twice to come back and post about their results, or share them.


With respect, I would disagree with this.

The Nissen is major surgery that takes a long time to recover from. The first few months are like a rollercoaster ride and you get a lot of severe and misleading symptoms (including reflux) that convince you the surgery has failed.

People seek help as most surgeons seem incapable of telling the patient up front what the journey will be like. Instead we have to find out for ourselves and seek help and information from support groups like this.

Maybe surgeons don't tell their patients the severity of the surgery as "a positive frame of mind aids recovery" - well this fails when months later you still wake up with chronic reflux, cannot eat, miss work as you cannot stand up straight, and have pain from your chest to your groin.


No doubt it is a serious, involved surgery that entails a long, trying healing process. That said, I still feel it's disingenuous to imply that complications or poor outcomes are anything but a small minority of cases.

ldrunner said...
Months or years later people may be glad they had the surgery and celebrate having no or reduced reflux, but I don't hear of people who have this surgery and just "move on with their lives". It is major surgery and your body will react appropriately.


Of course you don't hear of them - they aren't posting to message boards about their problems because they're out living their lives instead. I have many chronic illnesses, and a great deal of experience with illness-specific forums. It's incredibly important to remember that most of the complications and negative outcomes you will see in forums are the minority of patients whose problems are so difficult or trying that they seek out assistance or information from others. It's a confirmation bias.

It is important to understand what will happen, and what can go wrong - but I think it's wrong to ignore the many, many majority of patients that are successful with no major complications.

EJohn
Regular Member


Date Joined Jul 2014
Total Posts : 62
   Posted 7/26/2014 11:34 PM (GMT -6)   
Thanks for responding everyone.

Alcie:

I was seeing one GI specialist from ~2011-2012 and had many tests done, including several ways to visualize potentially affected/problematic areas, like a CT scan of the abdomen, a lower bowel series, a HIDA scan of the gallbladder, x-rays, upper GI scope, etc. I've also had other tests done like getting my thyroid checked, a celiac's test, allergy tests, and less specific blood tests. This specialist came to the conclusion that I needed a Nissen done.

I moved to a new city and started seeing a new GI specialist from 2012-Present. I had some of these same tests done, including a upper GI scope with pH testing and a biopsy to check for H. Pylori, and more allergy/blood/thyroid tests. The pH testing showed that I had bad reflux even when taking 30mg two times a day (the medication that works best for me). We've also gone through a LOT of medications, like 5 different PPIs.

Brianala:

It kind of seems like we are going through the same thing right now, so I really appreciate your support/feedback. My biggest fear, however, is not just the surgery itself, but the combination of the surgery going poorly and how that would affect my job status. Unfortunately, my job already seems in jeopardy because my performance this past year has been less than adequate for many reasons related to my symptoms and my symptom related depression, but I guess I can't blame it all on that.

about finding an experienced surgeon... My GI specialist recommended me to a seemingly good surgeon - the surgeon attended, did her residency, and currently works at institutions that are ranked in the top 25 medical schools/hospitals. Apparently, she does a lot of bariatric surgeries, but has only led 8 Nissen Fundoplications in the past 2 years - its possible that she was a co-surgeon for others, but those records were not identifiable when I asked. I'm not sure if this is acceptable or not. Do you have any opinions on this? I feel like I would post a link to her information, but I'm not sure if I should...

ldrunner
Regular Member


Date Joined Dec 2013
Total Posts : 103
   Posted 7/27/2014 4:46 PM (GMT -6)   
Brianala said...
ldrunner said...
Months or years later people may be glad they had the surgery and celebrate having no or reduced reflux, but I don't hear of people who have this surgery and just "move on with their lives". It is major surgery and your body will react appropriately.


Of course you don't hear of them - they aren't posting to message boards about their problems because they're out living their lives instead. I have many chronic illnesses, and a great deal of experience with illness-specific forums. It's incredibly important to remember that most of the complications and negative outcomes you will see in forums are the minority of patients whose problems are so difficult or trying that they seek out assistance or information from others. It's a confirmation bias.

It is important to understand what will happen, and what can go wrong - but I think it's wrong to ignore the many, many majority of patients that are successful with no major complications.


Lol, It's not confirmation bias, that's just amateur psychology gone wrong.

Everyone knows this surgery has a high success rate, that’s why it is performed. I was told the success rate is 80% but I suspect it is higher. The point you are missing is that unlike a lot of other operations the symptoms for the first several months after this operation can give every indication of failure - reflux, gurgling, feeling like the esophageal sphincter is wide open, pulling the scaring in your torso leading you to believe the wrap has slipped. That's why people need support - it's more "presumed failure" that actual failure, and a lot of hospitals don't seem to prepare people adequately for this, or give people any kind of support when they're going through it.

After a while you learn to ignore these feelings and they gradually go away, but what people experience afterwards isn't a "small minority of cases".

SharonZ
Veteran Member


Date Joined Mar 2014
Total Posts : 1462
   Posted 7/28/2014 12:23 PM (GMT -6)   
In addition to multiple endoscopies (I had h-pylori bacteria), I had a barium swallow, 48-hour Bravo ph monitoring, and an esophageal manometry. I've had great success with my nissen wrap and hernia repair, but it is not an easy recovery. I think too many people want to have the surgery without going through all of the proper testing for a definitive diagnosis. I'm 3-months post surgery and still in the recovery phase. I missed 6 weeks of work, and then went back part time.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 1:04 AM (GMT -6)
There are a total of 3,005,988 posts in 329,290 threads.
View Active Threads


Who's Online
This forum has 161817 registered members. Please welcome our newest member, Butterfly_.
258 Guest(s), 2 Registered Member(s) are currently online.  Details
nagawarrior, Butterfly_