New GI Doc Post-Nissen

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dencha
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Date Joined Feb 2009
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   Posted 1/21/2012 9:23 PM (GMT -6)   
Hi All,
I had an interesting experience during my visit with a new GI doc I saw yesterday.  I was referred to him by my PCP, since in our new home I didn't yet one.
 
As it was our first visit, he had a lot of questions for me.  I'd had my other two GI docs and the Nissen surgeon in this area send him reports, so he already had a thick stack of information--probably never a good sign!
 
The reason I think it was interesting is that it gives a little insight into GI attitudes toward atypical symptoms and Nissen surgery.
 
He was interested in my pre-Nissen history, which I provided, along with my own commentary on how my GI doc in my old city wouldn't recommend surgery in the face of overwhelming evidence provided by my PCP and asthma docs.
 
His comment--"He wouldn't want to recommend a surgery that might not help you."
 
He questioned whether I actually noticed improvement after surgery (which I did, once I overcame the lung infection I had before, during, and after surgery.)
 
That's the problem.  These GI docs are fearful of recommending surgery to those of us with atypical symptoms, and the reason is that generally our symptoms are in reaction to a rather small amount of reflux.  A Nissen surgery does not bring reflux to zero...that would be too tight and not allow food to enter the stomach. 
 
As you know from posters here, a person who had been through the surgery and recovery with no change in symptoms would not be a happy camper. 
 
Actually, I went into the surgery with that distinct possibility in my mind.  I was willing to take that chance, because I was out of options.  At least my doctors could rule out reflux as the culprit.
 
One more thing:
I thought I was due for a colonoscopy, but my calculations were wrong and I'll be waiting a couple more years.  The GI doc told me that the prep is better than it was, because it doesn't require as much to drink.  He said there were just two doses, but one had to be taken in the middle of the night.
 
Because I'd told him that when I drink a lot of water it sits at the wrap site and takes some time to drizzle into my stomach, he said that I would have to sit up 1-2 hours after taking the middle of the night dose.  I'm assuming it would be irritating to the esophagus if it sat there for any length of time.
 
I don't know if this thread is interesting to anyone, but thought I'd post it just in case.
 
Best wishes,
Denise

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 1/21/2012 9:28 PM (GMT -6)   
Hmm....mi GI seemed the same way.

But when I spoke with the surgeon he told me he could help me.

Is this most the case?

aeshleyrose
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Date Joined Jul 2011
Total Posts : 656
   Posted 1/22/2012 9:59 AM (GMT -6)   
Hey Denise,

Did you have the 360 wrap? Sorry, I can't quite remember.

Thanks for posting! Any little bit helps :)

Ashley

dencha
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Date Joined Feb 2009
Total Posts : 7181
   Posted 1/22/2012 10:51 AM (GMT -6)   
Hi Maximus and Ashley,
I had the 360 wrap, and with my extreme reactivity, I think it was the only way to go for me.  It would not take much to get my lungs going, and the tighter the better.
 
Water has always been held up a bit at the wrap site.  It must be its consistency.  I have no trouble at all with food, but do find it very hard to take large, large pills.  Especially rough ones.  I switched to liquid calcium because of that.
 
Honestly, the water issue doesn't bother me, except when I'm on the treadmill.  I've found I have to reduce my speed when I take a drink, or the bouncing movement splashes the water up into my breathing tube.  (That's my assumption, and I think it's correct.)
 
Other than that, it's no big deal.  I've never had trouble with bloating, and I could burp (I should say my stomach could burp itself) immediately after surgery, so my recovery was pretty much bloat free most of the time.
 
I'd really like to lobby GI docs with information regarding how helpful this surgery can be to atypical patients.  My asthma doctor also finds GI docs exceedingly frustrating, as they have no idea of how reflux affects lungs.  GI Docs are focused on LARGE amounts of reflux, and those are the people they send to surgery, since it's a no-brainer that they'll be helped by tightening the LES area.  As my asthma doc said, it takes very little reflux to set lungs off.  He has met very few GI docs who are competent in this area.
 
Be persistent.  It took me at least 4 years of suffering to finally convince my GI doc that he should send me to a surgeon for a consultation.
 
I saw two surgeons before my Nissen.  The first one was a referral from my PCP after he threw his hands up in frustration over my GI doc's resistence to trying surgery to help my EXTREMELY sick (he said life-threatening) lungs. 
 
The first surgeon did a barium swallow and endoscopy. (I'd already had a stomach-emptying test, manometry, and 24hr PH test with my GI docs)  Because he respected my PCP greatly and was going on his recommendation, he told me that I was a good candidate for surgery and that I should make an appointment.
 
Because I'd been here on the forum and reading a lot about the surgery, I decided I wasn't ready to get the surgery done by that surgeon before researching it further.
 
I went back to my GI doc with that information in hand, and FINALLY he took my PCP seriously (I think he realized that my PCP meant what he said)and told me that certainly a couple good blasts of acid a day could cause lung problems.  (Even then he said I could either continue treating my reflux with PPIs, or I could look in to surgery--very unequivocal)  He then sent me to the surgeon he recommended.  (He said that if he were getting the surgery, he's go to this surgeon.  I also had a nurse-anesthetist friend who said that's who he'd send his family to.)
 
Anyway, the surgeon looked at my info and did say he had some concern regarding the low DeMeester score.  (14.8 or so)  That said, he felt he could do the surgery on the recommendation of my other doctors, and that if my asthma was being made worse by reflux, the surgery would help it.
 
Three weeks later I had the surgery, and the rest is history!
Good luck with your quests for relief!
Denise

Post Edited (dencha) : 1/22/2012 9:57:19 AM (GMT-7)


bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/22/2012 2:52 PM (GMT -6)   
Hi Denise --

Do I remember reading in one of your threads that you continue to take PPIs? Sorry if I have that wrong.

Thanks!

-Bruce

dencha
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Date Joined Feb 2009
Total Posts : 7181
   Posted 1/22/2012 3:05 PM (GMT -6)   
Hi Bruce,
Yes, you have that right.  It's not because I'm experiencing any heartburn, though.  My asthma doctor and PCP realize just how reactive my lungs are (actually I'm generally reactive all over!) and have asked me to continue with a 40mg dose of Protonix before dinner.  I have also maintained my bed elevation. 
 
These protective actions are with the full knowledge that unless the wrap is done so tightly that no food can get down, there will be an occasional reflux incident.  Since I react to very little reflux, the Protonix is just an additional protective device to ensure that my lungs maintain the good health that was achieved with the surgery.
 
I don't mind a bit.  I never expected to necessarily be totally PPI-free with the surgery.  If it were simply for heartburn, I wouldn't take the Protonix.  This is a completely different issue altogether.
 
Hope that clarifies my situation in regards to PPI usage.
Best wishes,
Denise
 
 

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/22/2012 3:25 PM (GMT -6)   
Thank you, Denise, for that clarification! You've been my "gold standard" for the Nissen and respiratory reflux, but I'm not sure there's much hope for my situation since I can't tolerate the PPIs.

I suppose I could continue, like you, sleeping elevated, and perhaps continuing with the Gaviscon before bed...if I chose to go ahead with the Nissen. If you don't mind me asking, how much benefit do you attribute to the Nissen, and how much to the Protonix? Was there ever a time, post surgery, when you didn't use a PPI? If so, how did you feel during that time?

Thanks!

-Bruce

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 1/22/2012 3:39 PM (GMT -6)   
Bruce what were symptoms again? Thanks

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/22/2012 6:46 PM (GMT -6)   
I have dysphagia (probably borderline globus sensation without the knotted muscle) laryngitis/hoarseness if I speak more than three or four minutes, phlegm, gurgling and popping noises when I breathe, burning in my mouth in the morning, and occasionally episodes that reach the back of my throat when standing. I also have moderate eosinophilic esophagitis, which is attributed to the reflux and not a food allergy.

-Bruce

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 1/22/2012 6:48 PM (GMT -6)   
Did tif help with any of yoour symtoms?

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/22/2012 8:22 PM (GMT -6)   
According to the post-surgery Bravo test, I'm in the low "normal" range, down from a score of 24 or so. Yes, the severity of the symptoms is less, but still enough to make me miserable...and unable to sing, which was my passion in life.

-Bruce

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 1/22/2012 8:25 PM (GMT -6)   
I hear so many asthmatic symptom people who get tremendously better after nissen surgery. Wouldn't lpr sufferers benefit from it as well by reinforcing the les?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 1/22/2012 8:57 PM (GMT -6)   
Hi Bruce,
I attribute ALL my lung improvement to the surgery and the surgery alone.  I was on tons of PPIs before my surgery and my lungs were horrible.  I was using a nebulizer for treatments several times a day.  I was on 4 times as much inhaled steroids with additional oral steroids when things got really bad.  Once my poor sick lungs had time to recooperate after my surgery, they improved 100%.  I haven't had to take prednosone since my surgery.
 
Yes, there was a time when I didn't take PPIs, and I wouldn't be taking them now if my asthma doc hadn't insisted on it.  I have severe grass, weed, mold, dog, and tree allergies, so I do get some asthma problems during pollen seasons when I spend too much time outdoors.
 
My allergist has spent the fall and winter building up my allergy shots with a much stronger formuation in hopes that it makes me possible to join the rest of the world in enjoying the beautiful outdoors during pollen season.  I hope it helps, but I don't have all that much confidence that it will.
 
Last year I tried to ignore my allergies and go out and hike daily.  It was fine for maybe a month, but then the constant exposure caused me all kinds of sinus and lung issues.
 
Once I stayed indoors and no longer was exposed to all that pollen, my lungs cleared and have been fine ever since (except for a moment mid-December when I aspirated food or drink.  That took several weeks to resolve, but it was nothing like my pre-Nissen lungs.). 
 
Because my allergist is struggling with my allergy issues, he wants to rule out any possibility that things are being made worse by a possible reflux episode.  Hence he requested that I take the 40mg Protonix before dinner.  I spoke to my PCP about it and he agrees that is a good idea with my history. 
 
Good luck finding an answer...
Denise
PS--Joy had atypical symptoms including throat-clearing.  She definitely found relief with her partial wrap.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/22/2012 9:23 PM (GMT -6)   
Thank you, Denise, for sharing more details. I really appreciate it! I've never had asthma, but I certainly can empathize a bit with what you must have endured. It's so frustrating not to be able to breathe freely!

Hope you are able to find relief from your allergies! :)

-Bruce

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 1/23/2012 7:16 AM (GMT -6)   
Thanks, Bruce. turn    That's why it's such a frustration to see GI docs so closed-minded about suggesting and suporting the surgical option for people with atypical situation. 
 
I would have avoided the permanent damage that was done to my adrenals and skin if I had not had to wait so long for surgery.
Denise
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