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thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 11/30/2012 8:40 AM (GMT -6)   
I haven't even been officially diagnosed. Some of you know I'm seeing Dr. Jaimie Kaufman next week. I wonder if someone, anyone who came through it can address my current fears (forget about cancer, i'm talking about the day to day)

1. I have a five year old. Unless I haven't eaten in hours I can't bend over to play with him, pick up his toys, even lean over for a kiss unless I do it super fast. I was playing hopscotch with him waiting for the school bus in the driveway BEFORE I even ate (after PPI) and I leaned over to pick up a stone and started stinging/coughing/choking.

2. The sounds coming out of me are scaring the sh-t out of my son. It is very confusing and i seem more sick than I am.

3. Not only to I love food (most of which I can probably never eat again) my biggest passion is cooking AND I sell gourmet foods for a living. I host tastings on a weekly, sometimes daily level and I feel if i can't taste it I won't be able to get enthusiastic about selling it?

4. I love to relax, recline and spend time with family. Lately I feel like i have to upright 24/7. How can I possibly have five small meals a day and then have to wait two hours to do anything but stand or sit bolt upright?

5. Sex. Dinner with my husband after work. Amusement parks or swimming with my kid....

I would have any surgery to fix this. Please tell me these aspects of my life aren't over. It's very hard to time things when you're a stay at home mom with a very physical child and active dog. I'm getting very depressed and in tears as I write this.

Please any words of hope.

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 11/30/2012 8:43 AM (GMT -6)   
oh and i'd like to add....i love yoga as much as everything above. The thought of curtailing or stopping these things is like starting a identity. And it took me so long to get to a place where I'm happy and enjoy the things I do and the people i love.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/30/2012 9:00 AM (GMT -6)   
Hi thegspeak,
You sound like a perfect candidate for a Nissen.  I remember the day I went in for he surgery.  I bent over to pick something up and immediately got acid in my throat and started coughing.
 
Since my surgery my lungs are great and I rarely get reflux.  (The surgery can't take reflux to zero, or it would be so tight that you couldn't swallow!)  I can do everything without reflux issues, and can eat anything I like.  (One exception is that because I have a sensitive stomach, and it doesn't like coffee much.  I drink a little, but tea is better.)
 
Good luck with your appointment.  Yes, you can get better. Hang in there!
Take care,
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 11/30/2012 9:12 AM (GMT -6)   
Thank you. Can you tell me what the surgery is like? recovery etc?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/30/2012 9:25 AM (GMT -6)   
Hi thegspeak,
Here's a link to my early recovery journal...that's the toughest part:
 
It takes 6 months for most of the healing, but you get gradually better during that time.  At 4 months we were on vacation and I was eating out at restaurants every night and eating pretty much whatever I wanted.
 
If you're suffering the way you describe, any little quirks you have will be well worth it in the long run.  If you haven't been on meds yet, they'll go that route first.
Good luck!
Denise

GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 11/30/2012 10:14 AM (GMT -6)   
Thank you very much :)

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 11/30/2012 10:43 AM (GMT -6)   
Hi thegspeak,

Sorry that you are going through these troubles. However, there is hope.

I don't know your whole story, but if you are having these issues recently, I think PPIs (meds) are worth a try. I know a friend who had reflux for a month or two and never had it again after taking PPIs and exercising. It sounds like you are into yoga, so I am not sure this will work for you.

All those things you mentioned are definitely not over. There are at least two good surgical options (Nissen, LINX) and I believe there will be a few more in the next 10 years. So, believe that the ideal day will come again and take baby steps towards diagnosis and treatment. Staying objective (instead of emotional) will help you take good decisions :)

Best of luck with your appointment and keep us posted !

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 11/30/2012 11:51 AM (GMT -6)   
Thanks so much. I wonder if nsaid abuse over the years caused this. I imagine it caused some gastritis but not sure what actually causes this! about to do a tasting and have a bottle of gaviscon in the corner with a straw in it! when i get "the sting" i take a small sip through straw and hold it in my mouth and swallow slowly. Seems to help temporarily.

I've been on PPI (Prilosec which seems doesn't work as well as nexium) and it's not diong A THING. :(

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/30/2012 2:23 PM (GMT -6)   
Hi thegspeak,
The answer to the NSAID question IMHO, is yes.  I took them for back pain for a long time, and I do think it creates problems for people who are prone to stomach issues.  I don't take ANYTHING for pain anymore.  Not even a headache.  For non-headache pain, ice works great.  For headaches lying down does wonders for me.
 
Hang in there.  You'll find an answer.  There are different PPIs and different dosages.  If you get testing and it's deemed you need surgery, I can recommend the Nissen.  It has been a lifesaver for me, and is considered the "gold standard" treatment for GERD.
 
There are some new methods, as gerd_hater said.  My GI docs didn't recommend any of them, as they haven't been proven yet.  Maybe someday they'll take over the Nissen, but at this point in time it is the best option in the opinion of the GI docs I've seen. 
 
Still, I'll bet you can find relief with the right dosage of the right PPI.  They'll want you to give that a good long try before even considering surgery if your GI doc is anything like mine. 
 
Hang in there!
Take care,
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 11/30/2012 2:52 PM (GMT -6)   
Thanks. Three weeks on the prilosec and no change. Every time I speak i cough and choke. I know there's no quick fix but any thought on that? I just did a sale and choked through it.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/30/2012 3:43 PM (GMT -6)   
Hi thegspeak,
I was on 40mg Protonix an hour before breakfast and an hour before dinner, plus 300mg Ranitidine at bedtime before my surgey.  Some people do well with two doses of PPIs.  While it's supposed to be 24hr coverage, some need a boost before dinner. 
 
Be sure you're taking your PPIs correctly in order to get the most help from them.  Read over this document.  It gives some great advice:
 
You'll probably have to take some tests to see what's going on.  Generally they're a barium swallow, endoscopy, 24hr PH monitor, or 48 hr BRAVOph study, and perhaps a manometry. That way your GI doc/ENT will know what's going on.  I expect Dr. Kaufman will scope your throat and vocal chords to look for evidence of reflux.
 
Give the PPIs a try and take them properly.  Hopefully that will do the trick for you.  Avoid food triggers (Google them), avoid bending...squat instead.  Hang in there!
You will get better eventually, one way or the other!
 
Good luck,
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

belljar1995
Regular Member


Date Joined Dec 2011
Total Posts : 93
   Posted 11/30/2012 5:14 PM (GMT -6)   
Hi thegspeak
Last year I saw Jamie Koufman. She is very nice and will video the exam so you will have a chance to see the areas damaged, etc. She talks fast though! Also she had a NIssen, because she suffered very long with GERD/LPR

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 11/30/2012 5:22 PM (GMT -6)   
When the PPI's start working what is the first thing people notice? I really think i have that oversensitive larynx thing because i literally talk, breathe! and cough. And cough until some liquid i guess I aspirated comes up. I wish i had nexium and not Prilosec!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/30/2012 8:37 PM (GMT -6)   
Hi thegspeak,
If you're taking your PPIs properly, and have been through all the PPI's out there at peak dosage and you're still having problems as bad as what you're saying, you may end up with surgery. 
 
In my case, I was on peak dosage of medications and still had bad lung problems, which is why I had the surgery.  The statistics are a little lower for atypical symptom improvements after Nissen (70%-80%) as compared to typical GERD (in the 90%+ range), but that's still pretty good odds.  I had no choice but to have the surgery...I'd tried everything out there with no improvement.
 
If you're aspirating, you're probably the type of person that GI docs and surgeons feel are great candidates for Nissen fundoplication.  Right now, you don't need to think about that...just go see Dr. Kaufman, and see what she has to say. Hang in there! 
 
Good luck,
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/1/2012 3:08 PM (GMT -6)   
Thanks Denise. I keep reading that Nexium works better than prilosec but i'll stay the course until i see her. Today i was doing ok. I had ONE chocolate chip and five minutes later the stinging and coughing started. It feels like tear gas or something choking me!

Oh one interesting thing is my coughing used to make my nose fill up and eyes stream and it no longer does that. I feel less congested in general. Can that mean the PPI is slowly working? Now it's all in my throat.

I wish there wa something i could do to desensitive my throat so i can get through work tonight.

Anyway, thanks :)
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